Today we had another appointment. Surprising, I know. It was for an ultrasound and a 'work up'. What that basically means it that the practice I've been going to finally switched all of my care from my regular OB to strictly their practice. They did the ultrasound then a normal OB appointment where they weighed me, took my blood pressure, etc etc. Today Dr. Lanouette did our ultrasound, then we meet Dr. McLean, who did our OB appointment. Now we have meet all four of the doctors at the office. When their we will see who ever is available for that day. Also the doctors have a weekly meeting and discuss the patients so everyone is up to date. They have a picture of us to go along with our chart to make sure they know who they are discussing. Also, they are going to make and send a chart over to UCD and keep it up to date just in case I need to go in early and they are not on shift at UCD, the doctors at UCD will know my history and be prepared.
First, her growth is still slow and decreasing. They can't get an exact number of how many weeks/days she is behind since one of the measurements is around the abdomen, and that number is off since her intestines are not inside her abdomen. But the measurement for her leg was about 25 weeks, and her head was about 27 weeks. The tech said that she is about 1 lb 11 oz. I was just excited to finally hear an estimated size sine we haven't been told anything as of yet. I've looked a little online, and for 28 weeks 'normal' weight is about 2.2 - 2.8 lbs. So if she really is 1.11 lbs, that's not too far off. Small yes, but with all things considering not to far behind.
Now, the new issue they found involves her umbilical cord and blood flow. Like I said, I am not 100% sure on what they mean and what they are talking about, but I will do my best to explain.
They noticed that the blood flow in her umbilical cord is restricted when she is trying to take blood in from the placenta. They way the doctor explained it was that imagine Anabelle is down lower then the placenta; the blood flow is normal and can move easily down to her. However when she is even or she is higher then the placenta is gets harder for the blood to flow from the placenta to her. This can cause her heart to work harder, and also can account for her being smaller. The doctor said that her heart still looks fine and doesn't look like it's working harder, but they want to track it just to make sure it doesn't get worse. I know that's jumbled and confusing. Sorry.. but that's as far as I understand and the best I can try to explain.
Also, they are going to start Fetal Non-Stress tests at 30 weeks. They do them twice a week, every week. So we have 6 doctor appointments in January! With the Non-Stress tests, they just strap a few bands with monitors around my belly and check her heart rate and movements. They said they can last anywhere from 20 minutes to 2 hours. If within the first hour they don't see everything they need to see, then they'll have me walk around or move positions, then try again. And if after the 2nd hour they still don't see what they are looking for, they'll send me over to UCD to get checked out.
I also asked if we will deliver early because the surgeons were telling us different dates of when they like to deliver. Dr. McLean said that they do consult periodically with the surgeons. Last time they talked they decided that babies with gastrocentesis should be delivered between 36 - 37 weeks. I told her that the surgeon said they like the babies to be as close to term to avoid the extra complications associated with preterm babies, and she said they will talk again with the surgeons and develop a plan for us.
I am finally doing my titers again to check the antibody levels as well as doing the glucose screen and a cystic fibrosis screening. They also started us on a fetal movement diary to make sure her movement is keeping up. The doctor said her limbs arn't moving, and I am feeling her head and body move. We were able to see her moving during the ultrasound though. Oh! And Dr. Lanouette said that she is very low already, but so were Amelia and Allison.
Ok, I think that covers today's appointment! We start our Non-Stress tests (NST) on the 9th. We'll continue to keep you all updated.
Hope everyone had an amazing Christmas, and hope you all have a safe and happy New Year's!
With love,
The Polks
Thursday, December 29, 2011
Thursday, December 22, 2011
Ultrasound Pictures!
Here are the ultrasound pictures from our last ultrasound. This is at 26 weeks, and they really are not very good... but at least we got some! : )
Here is her profile. You can totally see her nose and lips!
Here is her foot and leg. If you can make it out.. you can tell it's clubbed, but again, it's not a very good picture..
We have another appointment next week and will keep everyone updated.
We wish everyone a very Merry Christmas!!!
With love,
The Polks
Thursday, December 15, 2011
Bi-weekly ultrasound
Yesterday we had our bi-weekly ultrasound. They actually call it a doppler. It measures how fast the blood is flowing in Anabelle's brain. If it flows to fast, that can be a sign of anemia, caused by the antibody. Luckily, they said it looks perfect! And they don't think it will even be an issue for this pregnancy!
We meet a new doctor this time, Dr. Haesslein. He was nice, but I felt rushed and didn't feel like I had a chance to ask questions. I was able to ask about the amniotic fluid level though. I was curious if they think the arthrogryposis could be due to low amniotic fluid, called restricted arthrogryposis. However, he said the levels are fine. I also asked since I feel her moving, what parts are moving if she has arthrogryposis? He was curious and wasn't sure either.
Hopefully we will get more answers at our next appointment on the 29th. The next appointment they will chart her growth again, and do the doppler. They will also officially take me in as their patient, and said they will do a 'work up'. I'm not sure what this will include, but they said to expect to be there for at least two hours. We will see!
With love,
The Polks
We meet a new doctor this time, Dr. Haesslein. He was nice, but I felt rushed and didn't feel like I had a chance to ask questions. I was able to ask about the amniotic fluid level though. I was curious if they think the arthrogryposis could be due to low amniotic fluid, called restricted arthrogryposis. However, he said the levels are fine. I also asked since I feel her moving, what parts are moving if she has arthrogryposis? He was curious and wasn't sure either.
Hopefully we will get more answers at our next appointment on the 29th. The next appointment they will chart her growth again, and do the doppler. They will also officially take me in as their patient, and said they will do a 'work up'. I'm not sure what this will include, but they said to expect to be there for at least two hours. We will see!
With love,
The Polks
Tuesday, December 13, 2011
Pediatric Surgeon Consult
Today we had our surgeon consult. Unfortunately, the doctor told us basically everything that we already know. The only main difference was his statistics. Also, he didn't touch any of the orthopedic issues, and said that we'll have to talk with an orthopedic doctor about them... another specialist. But Dr. Marr, the surgeon, told us that about 90% of gastroenteritis babies are able to have the primary closure, while Dr. Phillips said about 75% are able to have the primary closure. Dr. Marr also said that about 5-10% need to have another surgery while in the NICU because there might be an obstruction in the bowels, or a dead piece of intestine, or something else along those lines, and they have to go back in and try to correct it.
Also, for the first week or so, they will feed Anabelle through an IV. I wondered about nutrition, since she won't actually be eating. Dr. Marr explained that she will receive all of the nutrition she needs through an IV inserted in either her arm or leg. The IV feedings will help her bowels and intestines recover from being either pushed all back in at once, or over a period of time. Then, whenever they think she's ready, they will try to start feeding her through a tube through her nose or throat, and as soon as she shows that she is tolerating those feeding then they will wean her off those to regular feedings. If she doesn't tolerate the tube feedings, and depending on the symptoms she shows, they're could be something wrong with her intestines, and that's when she would go back into surgery.
Dr. Marr also said they will take Anabelle into surgery probably an hour or so after she's born to attempt the primary closure. He also said that he personally feels it is best for Anabelle to try to go to term, or as close to it as possible. This way we can avoid the other issues primary babies have, hopefully.
Tomorrow, we have another follow up ultrasound, the bi-weekly appointment. The one at Sacramento Maternal Fetal Medicine where they check her growth and make sure her blood flow doesn't show any signs of anemia from the antibody issue. And hopefully they can answer a few more questions I have and offer some more guidance as to what to expect more exactly. I'd just like to narrow it down since about a month ago they didn't give Anabelle a fighting chance. And now that seems to have changed, so I am just looking for some answers as what we could possibly expect...
Again, thank you everyone for the continued love and support. We appreciate and love you all more then we can ever begin to explain.
With love,
The Polks
Also, for the first week or so, they will feed Anabelle through an IV. I wondered about nutrition, since she won't actually be eating. Dr. Marr explained that she will receive all of the nutrition she needs through an IV inserted in either her arm or leg. The IV feedings will help her bowels and intestines recover from being either pushed all back in at once, or over a period of time. Then, whenever they think she's ready, they will try to start feeding her through a tube through her nose or throat, and as soon as she shows that she is tolerating those feeding then they will wean her off those to regular feedings. If she doesn't tolerate the tube feedings, and depending on the symptoms she shows, they're could be something wrong with her intestines, and that's when she would go back into surgery.
Dr. Marr also said they will take Anabelle into surgery probably an hour or so after she's born to attempt the primary closure. He also said that he personally feels it is best for Anabelle to try to go to term, or as close to it as possible. This way we can avoid the other issues primary babies have, hopefully.
Tomorrow, we have another follow up ultrasound, the bi-weekly appointment. The one at Sacramento Maternal Fetal Medicine where they check her growth and make sure her blood flow doesn't show any signs of anemia from the antibody issue. And hopefully they can answer a few more questions I have and offer some more guidance as to what to expect more exactly. I'd just like to narrow it down since about a month ago they didn't give Anabelle a fighting chance. And now that seems to have changed, so I am just looking for some answers as what we could possibly expect...
Again, thank you everyone for the continued love and support. We appreciate and love you all more then we can ever begin to explain.
With love,
The Polks
Friday, December 9, 2011
Good News!
Good news!! Today we meet with the cardiologist, and he said that he doesn't see anything wrong with Anabelle's heart!! So glad to finally get some solid good news! Also, her heart is about the same size as his finger tip.. Amazingly small.
We also toured the NICU at UCD. It was very informative and nice to see how things are ran. The doctor told us the same information we already know, but it was just nice seeing where we'll be for a while. Depending on what happens when she is born, she will probably be in there for a little over a month, but possibly more. We learned about visiting and hours and how that whole system works. It will be hard because she will be born around cold season, so they said they probably won't allow Amelia and Allison in the NICU by her bed side for a few weeks... Which I know will be difficult for them to understand and accept. They already want to hold her! Allison actually just asked me a day ago if she could hold baby Anabelle : ) But we feel a little more comfortable now knowing what to expect as far as the NICU process goes. It's nice to be able to visualize everything.
Only about 15 more weeks to go! Maybe earlier depending on if they want to deliver her at 37 week. So if they let her go to 40 weeks, she will be here in a little less then four months.. crazy to think!
With love,
The Polks
We also toured the NICU at UCD. It was very informative and nice to see how things are ran. The doctor told us the same information we already know, but it was just nice seeing where we'll be for a while. Depending on what happens when she is born, she will probably be in there for a little over a month, but possibly more. We learned about visiting and hours and how that whole system works. It will be hard because she will be born around cold season, so they said they probably won't allow Amelia and Allison in the NICU by her bed side for a few weeks... Which I know will be difficult for them to understand and accept. They already want to hold her! Allison actually just asked me a day ago if she could hold baby Anabelle : ) But we feel a little more comfortable now knowing what to expect as far as the NICU process goes. It's nice to be able to visualize everything.
Only about 15 more weeks to go! Maybe earlier depending on if they want to deliver her at 37 week. So if they let her go to 40 weeks, she will be here in a little less then four months.. crazy to think!
With love,
The Polks
Tuesday, December 6, 2011
More Appointments
I was finally was able to talk to a neonatologist today... two actually! I spoke with Dr. Phillips and Dr. Hoffman, from UCD. They basically told me the same stuff we know.. plus some.
The main doctor I spoke with, Dr. Phillips, went over every complication individually and what they do or what they can do with them. He did say he's not sure what they will be able to do until Anabelle is born, but he seemed hopeful.
Below is what he's told me about the different issues:
Gastrocentesis: When she is born, the pediatric surgeons will take her and put a tube in her mouth and down her throat, to prevent air from going into her intestines. Then they will take her to OR and see if they can put her intestines back into her belly. This is called a primary closure. The doctor said that this is possible in about 75% of cases. If she doesn't have enough room to put her intestines back into her belly, then they will put a bag over the intestines and slowly push the intestines back in over a period of about two weeks or so. The average time a baby with just Gastrocentesis stays in the NICU for about 1 month. However, sometimes they stay for a little shorter, but possibly a lot longer. Just depends on when we deliver.
Clubbed feet, hyper-extended legs, and arthrogryposis (curled in wrists): I believe that's how you spell the wrist issue, but regardless.. the doctors grouped these issues into one topic, orthopedic. They said that it could be related to a nerve and spine issue, and if it is then it will be a lot harder to correct and Anabelle might be severely handicapped from them. However, if it's not a nerve and spine issue, then they can be fixed. They will have her, again, assessed after birth. He did explain if it's not related to a nerve and spine issue, then she will have physical and occupational therapy to help correct them. For the clubbed feet specifically, they will put her legs in casts a few weeks after birth to help straighten them. When I've search for different surgeries or treatment methods for these issues, I have come across a variety of possibilities. They sometimes do surgery, sometimes the casting is enough. Again, it will all depend on the severity.
He did recommend for us to come by UCD and visit/tour the NICU. He seemed like he was optimistic. Also he told me that he will do everything they can for us and Anabelle. He also let me know he is the attending doctor this week if we wanted to stop by and have him coordinate our tour. It just feels like finally we have a doctor who has some hope for us : )
We have an appointment on Friday (12/9) to meet with a pediatric surgeon this Friday and another appointment next Tuesday (12/13) with a pediatric cardiologist. The neonatologist didn't really venture into the heart problems knowing we has a cardiologist appointment. We also have our bi-weekly ultrasound appointment next Wednesday (12/14)..
Hopefully we can get a clearer picture of what's to come, but it doesn't seem like it. We just will have to wait and see...
With love,
The Polks
Friday, December 2, 2011
She's on the move :)
Just a quick update:
Last night Kyle and I finally were both able to feel Anabelle move! I haven't felt her move as of yet, so it was very very exciting!! Also, today I felt her again at work, and actually saw my stomach move.
UCD called too.. I thought I would have gotten a call back from a neonatologist because that's what the call was regarding, our consult... but haven't heard anything yet.. still waiting.
Just gotta have some hope <3
With love,
The Polks
Last night Kyle and I finally were both able to feel Anabelle move! I haven't felt her move as of yet, so it was very very exciting!! Also, today I felt her again at work, and actually saw my stomach move.
UCD called too.. I thought I would have gotten a call back from a neonatologist because that's what the call was regarding, our consult... but haven't heard anything yet.. still waiting.
Just gotta have some hope <3
With love,
The Polks
Wednesday, November 30, 2011
All about Anabelle
With this being our first post, I want to make sure everyone is up to date, so I will start from the beginning. Just a warning, it's a lot of information...
Back in October we opted to have AFP testing. AFP stands for Alpha-Fetoprotein. It's a protein the baby produces, and all they have to do for the testing is take my blood and test it. If the AFP levels are higher then normal, it can mean a variety of things from the expected due date to the baby could have spina bifida, gastroschisis, and possibly chromosome problems. Our primary doctor called and levels were elevated, so she was going to send us to meet with a specialist.
On November 2nd we went and meet with a genetic counselor first, went over what we could possibly be facing, and then we waited for our ultrasound. The tech did her thing, and then the doctor came in. Thinking we could possibly be facing spina bifida as the worst case scenario, we were not in the least bit prepared for what came next.
The doctor started his list. First he saw the in fact Anabelle's intestines are outside her abdomen, leading to why the AFP levels were so elevated. Then he noticed her feet are clubbed, said she is missing her knee caps, and her arms don't move correctly. Also, she was measuring about a week smaller then she should. The position she was in made it difficult for the doctor to see everything he needed, but he also said that he had a concern about her heart, but wasn't sure. With this, we decided to have an amniocentesis performed, which I was not ready for! Regardless we had the amnio, and waited 8-10 days for the results. They tested Anabelle's chromosomes for any abnormalities, specifically Trisomy 18. We got the results back, and they couldn't find anything wrong with her chromosomes.
Next we did a test for the Rh factor we have to deal with with any pregnancy due to the antibodies in my blood. When the test for this, they also did a test called a Microarray. Both tests were done using the amniotic fluid they took from the amniocentesis. The test just came back on Monday. Anabelle does have at least one little c. This means if the antibodies in my blood become strong and smart they can attack the red blood cells in Anabelle's blood, causing anemia. To monitor this, they do an ultrasound and tract her blood flow in her brain. Luckily, so far that doesn't seem to be an issue. As far as the Microarray goes... what they test for is strands in the DNA that are incorrect. They also test to see if there is any additional or missing pieces of any chromosomes. Unfortunately, they usually have about only a 10% success rate of finding anything and we were part of the 90%. They found nothing wrong, which is good, and bad. It's good because it shows that there isn't a big chromosome issue, if any at all. But bad, because now we have no idea what to expect. There is no further testing they can think to do now, and we will just have to wait and see how things go.
Today we had our follow up ultrasound to tract Anabelle's growth and check her blood flow.
Today we learned that her knee caps might come in time, we will just have to wait for a definite answer with time. Also, it appears her growth is slowing down, and she is about two weeks behind now. The doctor said that she doesn't expect that to improve, but rather get worse. Also they could she her arms and hands a little better, and they think her wrists and hands are turned in. (Imagine trying to touch your fingers to the inside of your forearms.) She also said that she believes she might have a hole in her heart, but is unsure, so she is going to have us meet and have a consult with a cardiologist. Next, she said she wasn't sure if she could see the aorta. We got a chance to ask all of our questions, but unfortunately without a diagnosis, there are not a lot of answers available. There is nothing I can do or take to help her in any way, we have no idea what to expect, we don't know what can be operated on, etc etc.
With all of this said... We will be delivering at UCD, and will be having a consult with a neonatologist from UCD.
We will be having ultrasounds every two weeks to check her blood flow and growth, and I will keep everyone posted.
We will try to post something every couple days. We'll try to keep everyone posted on what is going on with us and our family. Again, thank you all for your continued support and love.
With love,
The Polks
Back in October we opted to have AFP testing. AFP stands for Alpha-Fetoprotein. It's a protein the baby produces, and all they have to do for the testing is take my blood and test it. If the AFP levels are higher then normal, it can mean a variety of things from the expected due date to the baby could have spina bifida, gastroschisis, and possibly chromosome problems. Our primary doctor called and levels were elevated, so she was going to send us to meet with a specialist.
On November 2nd we went and meet with a genetic counselor first, went over what we could possibly be facing, and then we waited for our ultrasound. The tech did her thing, and then the doctor came in. Thinking we could possibly be facing spina bifida as the worst case scenario, we were not in the least bit prepared for what came next.
The doctor started his list. First he saw the in fact Anabelle's intestines are outside her abdomen, leading to why the AFP levels were so elevated. Then he noticed her feet are clubbed, said she is missing her knee caps, and her arms don't move correctly. Also, she was measuring about a week smaller then she should. The position she was in made it difficult for the doctor to see everything he needed, but he also said that he had a concern about her heart, but wasn't sure. With this, we decided to have an amniocentesis performed, which I was not ready for! Regardless we had the amnio, and waited 8-10 days for the results. They tested Anabelle's chromosomes for any abnormalities, specifically Trisomy 18. We got the results back, and they couldn't find anything wrong with her chromosomes.
Next we did a test for the Rh factor we have to deal with with any pregnancy due to the antibodies in my blood. When the test for this, they also did a test called a Microarray. Both tests were done using the amniotic fluid they took from the amniocentesis. The test just came back on Monday. Anabelle does have at least one little c. This means if the antibodies in my blood become strong and smart they can attack the red blood cells in Anabelle's blood, causing anemia. To monitor this, they do an ultrasound and tract her blood flow in her brain. Luckily, so far that doesn't seem to be an issue. As far as the Microarray goes... what they test for is strands in the DNA that are incorrect. They also test to see if there is any additional or missing pieces of any chromosomes. Unfortunately, they usually have about only a 10% success rate of finding anything and we were part of the 90%. They found nothing wrong, which is good, and bad. It's good because it shows that there isn't a big chromosome issue, if any at all. But bad, because now we have no idea what to expect. There is no further testing they can think to do now, and we will just have to wait and see how things go.
Today we had our follow up ultrasound to tract Anabelle's growth and check her blood flow.
Today we learned that her knee caps might come in time, we will just have to wait for a definite answer with time. Also, it appears her growth is slowing down, and she is about two weeks behind now. The doctor said that she doesn't expect that to improve, but rather get worse. Also they could she her arms and hands a little better, and they think her wrists and hands are turned in. (Imagine trying to touch your fingers to the inside of your forearms.) She also said that she believes she might have a hole in her heart, but is unsure, so she is going to have us meet and have a consult with a cardiologist. Next, she said she wasn't sure if she could see the aorta. We got a chance to ask all of our questions, but unfortunately without a diagnosis, there are not a lot of answers available. There is nothing I can do or take to help her in any way, we have no idea what to expect, we don't know what can be operated on, etc etc.
With all of this said... We will be delivering at UCD, and will be having a consult with a neonatologist from UCD.
We will be having ultrasounds every two weeks to check her blood flow and growth, and I will keep everyone posted.
We will try to post something every couple days. We'll try to keep everyone posted on what is going on with us and our family. Again, thank you all for your continued support and love.
With love,
The Polks
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