Well, tomorrow could be hospital day.
I'll get back to that in just a second. I haven't updated in a little while, because most of everything has been "wait and see." I've had a few mentally and emotionally tough days over the past week or two. I've had quite a bit of anxiety, about nothing in particular, and about everything.
We had our shower this past Saturday. It was great! I had planned to include pictures, but I haven't had a chance to upload them, and tonight has been filled with more important things.
Like packing my bags for the hospital. I had my first bi-weekly appointment today. I knew last week that my labs weren't looking so great. My numbers that need to be up are down, and the ones that need to be down are up. My platelets are dropping, my bile acids and blood pressure are rising. Tanya wants to see how today's labs come back before making a decision tomorrow, but we're getting to the point of needing continuous monitoring. She prefers to err on the side of caution, and with the cholestasis (liver stuff), the risk of still birth is increased. And we don't want to take any chances.
She said if we make it to 34 weeks (next Wednesday), in her opinion, we're golden... if we make it to 35 weeks, that's icing on the cake, and she said if we make it to 36 weeks, we get sprinkles and a candle too! So, I'm still aiming for that candle! But the time in between may just be spent at the hospital.
We still don't have a definite answer from the specialist, and she doesn't think we will without an amnio, before T's birth. If it IS some type of skeletal dysplasia, a natural delivery could put him at a greater risk for neurological damages. So, Rocky and I have discussed (and Tanya is in agreement), that we will probably opt for a c-section, regardless of the next growth ultrasound findings, just to keep Tristan away from any unnecessary risks. We want a healthy baby and a healthy mommy.
So for tonight, I'm packing my bags and waiting to see what tomorrow holds.
Monday, January 27, 2014
Thursday, January 16, 2014
And The Specialist Says...
They're still not very concerned. This is great news!
Rocky says I can't accept good news, though. That's not it at all. I don't want to get my hopes up. His long bones are still measuring short... and they've fallen further behind than they were at the last appointment. The doctor (a different one this time) said that Tristan isn't displaying other signs of skeletal dysplasia. My concern, though, is what is making his measurements short? Can they really be that far behind if he's just going to be a not tall person? His head is measuring in a "normal" range and most of his short bones are "normal" too, so it looks like it's just his long bones that are small... not everything overall. And they're not concerned with IUGR, as my fluid level looks good, the placenta and umbilical cord look good, and the flow of nutrients and blood to and from him all looks good.
At the December appointment and today, his femurs are measuring less than the 3rd percentile, and all other long bones less than 5th percentile. In December, his bone measurements ranged from 1w2d behind to 3w6d, with most of them falling around 2.5-3 weeks behind.
Today, his bone measurements range from 1w3d behind to 4w5d behind, with most of them falling around 3.5-4.5 weeks behind.
It just doesn't make sense to me.
I want good news. I need good news. I'm ready for good news. It just doesn't logically make sense in my mind. How can they be that far behind and still be "normal"?
The doctor made a follow up appointment for 4 weeks, but I'm not even sure if I'll still be pregnant at that point. He did tell me that some children aren't diagnosed until birth, or even later on down the road. I'm going to discuss all of this with my regular doctor Monday and get her input.
Good news that I will accept is that he is weighing in right at 3 pounds! Grow, Tristan, grow!
Rocky says I can't accept good news, though. That's not it at all. I don't want to get my hopes up. His long bones are still measuring short... and they've fallen further behind than they were at the last appointment. The doctor (a different one this time) said that Tristan isn't displaying other signs of skeletal dysplasia. My concern, though, is what is making his measurements short? Can they really be that far behind if he's just going to be a not tall person? His head is measuring in a "normal" range and most of his short bones are "normal" too, so it looks like it's just his long bones that are small... not everything overall. And they're not concerned with IUGR, as my fluid level looks good, the placenta and umbilical cord look good, and the flow of nutrients and blood to and from him all looks good.
At the December appointment and today, his femurs are measuring less than the 3rd percentile, and all other long bones less than 5th percentile. In December, his bone measurements ranged from 1w2d behind to 3w6d, with most of them falling around 2.5-3 weeks behind.
Today, his bone measurements range from 1w3d behind to 4w5d behind, with most of them falling around 3.5-4.5 weeks behind.
It just doesn't make sense to me.
I want good news. I need good news. I'm ready for good news. It just doesn't logically make sense in my mind. How can they be that far behind and still be "normal"?
The doctor made a follow up appointment for 4 weeks, but I'm not even sure if I'll still be pregnant at that point. He did tell me that some children aren't diagnosed until birth, or even later on down the road. I'm going to discuss all of this with my regular doctor Monday and get her input.
Good news that I will accept is that he is weighing in right at 3 pounds! Grow, Tristan, grow!
Monday, January 13, 2014
Hormones and Doctor's Appointments
I seem to have an abundance of both of those these days.
My hormones and emotions seem to be out of control these days. My mood goes from one end of the spectrum to the other, in the matter of minutes. So, I go from feeling great and like I can handle anything that is coming my way, to not knowing what in the world to do or which direction to turn. Thank you, pregnancy!
I had my first appointment of the week today. Last week, everything looked fairly stable. Well, things change quickly! My doc confirmed that I have cholestasis. My bile acid levels have jumped quite a bit. In normal pregnancy, they are between 1 and 10. When they first checked mine, it was around 13.4... the last one came back in the 40s. From what I've read, if it gets above 100, they take the baby. She said it doesn't look like we'll make it to 37 weeks, and that 34 is our goal now. I'll be 31 weeks on Wednesday. My blood pressure is up and down. We'll wait to see what the specialist says and to see if it gets to a point where it stays up before we try meds, because that could affect the baby's measurements.
Tanya said that it's not enough to admit me today, and as long as my labs don't come back showing anything crazy, we'll see what the specialist says on Thursday, and see where we stand on Monday. It's literally a day by day process now.
On a happy note, here's a few pictures of my sweet Tristan!
Kissing his biceps:
All that working out makes him tired:
Oh, how I love my sweet boy!
My hormones and emotions seem to be out of control these days. My mood goes from one end of the spectrum to the other, in the matter of minutes. So, I go from feeling great and like I can handle anything that is coming my way, to not knowing what in the world to do or which direction to turn. Thank you, pregnancy!
I had my first appointment of the week today. Last week, everything looked fairly stable. Well, things change quickly! My doc confirmed that I have cholestasis. My bile acid levels have jumped quite a bit. In normal pregnancy, they are between 1 and 10. When they first checked mine, it was around 13.4... the last one came back in the 40s. From what I've read, if it gets above 100, they take the baby. She said it doesn't look like we'll make it to 37 weeks, and that 34 is our goal now. I'll be 31 weeks on Wednesday. My blood pressure is up and down. We'll wait to see what the specialist says and to see if it gets to a point where it stays up before we try meds, because that could affect the baby's measurements.
Tanya said that it's not enough to admit me today, and as long as my labs don't come back showing anything crazy, we'll see what the specialist says on Thursday, and see where we stand on Monday. It's literally a day by day process now.
On a happy note, here's a few pictures of my sweet Tristan!
Kissing his biceps:
All that working out makes him tired:
Oh, how I love my sweet boy!
Friday, January 3, 2014
So, What Is it?
Another afternoon in the doctor's office. And apparently, I'll be spending a lot of my time there. They did a non-stress test (nst) on the baby, an ultrasound to measure fluid levels and then we waited to see Tanya.
She said everything with him looks beautiful, based on the nst. His heart rate is good and the fluid levels are still good.
Based on all of my labs, she thinks I'm developing both pre-eclampsia and intrahepatic cholestasis of pregnancy (icp). ICP is a pregnancy related liver disease and pre-e is basically elevated blood pressure that can lead to much more serious things. Those are my own personal medical definitions of each, so take that for what it's worth. It's very rare for someone to develop both of those simultaneously in pregnancy. Also, I'm still quite early in my pregnancy to begin experiencing these symptoms. The biggest risk of ICP is stillbirth, and that is usually related to elevated bile acids, later in the pregnancy. Mine are already starting to elevate. She prescribed me a medicine to help my body eliminate the bile acids, since my liver isn't doing a good job of that on it's own. I'm 29 weeks 2 days, today. They don't let people with ICP go past 37 weeks, to prevent stillbirth.
So, if we make it to 37 weeks, we'll be doing fantastic. She said she predicts something more along the lines of 34 weeks though. So, we're probably having a February baby. His due date is March 19. Monday and Tuesday I will do steroid shots to help develop his lungs. It takes 48 hours for the steroids to work, so after Thursday, he will be "ready" for delivery at any time. As ready as we can make him, I guess. She said that a baby at 32 weeks with the steroid shots can do as well as a baby at 34 or 36 weeks without them. We're trying to prevent NICU and ventilator time. We may do another round of steroids later, depending on how everything goes. With the steroids, we have to watch my sugar, because it can make that go up.
I will see Tanya twice a week from now on. We will do weekly nst's and ultrasounds to monitor his growth and fluid levels. We will do labs at least weekly. If at any point, any of my lab levels shoot up, she will admit me to the hospital, until delivery- how ever long that may be. She also gave me a few symptoms to look out for and to call her immediately if I experience. Next week will be my last week of work until after delivery.
We still don't know what's going on with his long bone growth. She's hoping my follow up with Dr. Decker (the specialist) on the 17th will give us more insight there. IF Dr. Decker isn't concerned and if he doesn't show frontal bossing and increased chest size (both typical, but not ALWAYS seen in achondroplasia) and IF I make it to 37 weeks, I can still try for a vaginal delivery. But if any of those things should go awry, it's a c-section for us.
It's been quite a bit to take in. However, I feel like I'm in good hands, and they are doing a good job monitoring everything very closely. At least now, we know what we're looking at and what we can do to keep both me and him as healthy as possible. And that gives me a little peace of mind. Things could change at literally any minute, but right now, we're good, and I'm good with that.
Thank you for all of your thoughts and prayers! Keep them coming! We've got a baby to keep cooking for as long as we can!
She said everything with him looks beautiful, based on the nst. His heart rate is good and the fluid levels are still good.
Based on all of my labs, she thinks I'm developing both pre-eclampsia and intrahepatic cholestasis of pregnancy (icp). ICP is a pregnancy related liver disease and pre-e is basically elevated blood pressure that can lead to much more serious things. Those are my own personal medical definitions of each, so take that for what it's worth. It's very rare for someone to develop both of those simultaneously in pregnancy. Also, I'm still quite early in my pregnancy to begin experiencing these symptoms. The biggest risk of ICP is stillbirth, and that is usually related to elevated bile acids, later in the pregnancy. Mine are already starting to elevate. She prescribed me a medicine to help my body eliminate the bile acids, since my liver isn't doing a good job of that on it's own. I'm 29 weeks 2 days, today. They don't let people with ICP go past 37 weeks, to prevent stillbirth.
So, if we make it to 37 weeks, we'll be doing fantastic. She said she predicts something more along the lines of 34 weeks though. So, we're probably having a February baby. His due date is March 19. Monday and Tuesday I will do steroid shots to help develop his lungs. It takes 48 hours for the steroids to work, so after Thursday, he will be "ready" for delivery at any time. As ready as we can make him, I guess. She said that a baby at 32 weeks with the steroid shots can do as well as a baby at 34 or 36 weeks without them. We're trying to prevent NICU and ventilator time. We may do another round of steroids later, depending on how everything goes. With the steroids, we have to watch my sugar, because it can make that go up.
I will see Tanya twice a week from now on. We will do weekly nst's and ultrasounds to monitor his growth and fluid levels. We will do labs at least weekly. If at any point, any of my lab levels shoot up, she will admit me to the hospital, until delivery- how ever long that may be. She also gave me a few symptoms to look out for and to call her immediately if I experience. Next week will be my last week of work until after delivery.
We still don't know what's going on with his long bone growth. She's hoping my follow up with Dr. Decker (the specialist) on the 17th will give us more insight there. IF Dr. Decker isn't concerned and if he doesn't show frontal bossing and increased chest size (both typical, but not ALWAYS seen in achondroplasia) and IF I make it to 37 weeks, I can still try for a vaginal delivery. But if any of those things should go awry, it's a c-section for us.
It's been quite a bit to take in. However, I feel like I'm in good hands, and they are doing a good job monitoring everything very closely. At least now, we know what we're looking at and what we can do to keep both me and him as healthy as possible. And that gives me a little peace of mind. Things could change at literally any minute, but right now, we're good, and I'm good with that.
Thank you for all of your thoughts and prayers! Keep them coming! We've got a baby to keep cooking for as long as we can!
Thursday, January 2, 2014
Seriously?! You've got to be kidding right now!
Yep, that's how I feel. I hate to sound like I'm complaining or always writing about the bad stuff. But, damn! Just damn! I'm almost at my breaking point today.
I took my 24 hour urine collection to the doctor's office and they drew more blood.
Then, the nurse called to tell me that Tanya (my doc) had sent me a message on the patient portal system, but I hadn't gotten it yet.
Here's Tanya's message:
Bridgette
Your liver enzymes are stable but still remain elevated - other testing for preeclampsia is still normal range. It does not exclude this as a developing condition - so we need to recheck labs often. I mentioned to you that I added an additional test called bile acids to check for another possible cause of your liver enzymes being elevated. That test came back today elevated to 13.5.
I had Dr Taavon review all of your results and we are working on a plan for you as I am typing. I will send a copy of all of your labs to Dr Decker as well. It may help her differentiate the differences in measurements knowing that you have more than one thing going on that affects fetal growth. I want to see you tomorrow to discuss all of this and formulate a plan - too complicated to do via email.
One of the nurses is working on an appointment for you tomorrow - I want to do another ultrasound to look at fluid volume and a non-stress test for a baseline on your baby's heartrate patterns. I will send another message when we have a time for you.
Have you started your 24 hour urine test yet??
Tanya
Your liver enzymes are stable but still remain elevated - other testing for preeclampsia is still normal range. It does not exclude this as a developing condition - so we need to recheck labs often. I mentioned to you that I added an additional test called bile acids to check for another possible cause of your liver enzymes being elevated. That test came back today elevated to 13.5.
I had Dr Taavon review all of your results and we are working on a plan for you as I am typing. I will send a copy of all of your labs to Dr Decker as well. It may help her differentiate the differences in measurements knowing that you have more than one thing going on that affects fetal growth. I want to see you tomorrow to discuss all of this and formulate a plan - too complicated to do via email.
One of the nurses is working on an appointment for you tomorrow - I want to do another ultrasound to look at fluid volume and a non-stress test for a baseline on your baby's heartrate patterns. I will send another message when we have a time for you.
Have you started your 24 hour urine test yet??
Tanya
On the phone, the nurse told me that Tanya is going to do further testing to see if I have Intrahepatic Cholestasis of Pregnancy. This is basically a pregnancy related liver disease. From my dear friend, Google, I've learned that the greatest risk of this is stillbirth. So, maybe no pre-eclampsia (although we can't rule it out just yet)- yay... But now this???
I'm trying to look at the positive side if things and be hopeful that all of the testing will give us further insight as to what is going on with his growth, and thankful that we have caught all of this, whatever it may be, early enough and that they are keeping a good check on him.
So until tomorrow afternoon, I wait some more.
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