I received a phone call from Myriam, the genetic counselor a little while ago. The Athena Lab had called her with the test results and she wanted to pass them along to me right away. After her phone call to me, she was going to let Dr. Ponkey (the specialist working with us along with my general OB) know the results.
Let me preface the following information by saying that she is not a doctor and really doesn't know what all of this means. I do appreciate the fact that she wanted to get the information to me right away, but we definitely need to talk to Dr. Ponkey to find out what all of this really means ...
Kenton is a carrier for the gene that causes Finnish nephrosis. The good news is that he only has 1 gene, not 2, which means he does NOT have Congential Finnish Nephrosis. However, this just raises more questions. What is causing the severely elevated protein levels?
The lab is wanting to do another test to see if he has a different gene mutation that could also cause kidney nephrosis. Myriam didn't know what all of this meant, of course. She was telling me the names of all of the different genes, but it all sounded like a foreign language to me. With the help of the Internet, I was able to find the exact test that the lab would like to run. Here is the test itself: http://www.athenadiagnostics.com/content/test-catalog/find-test/service-detail/q/id/1837.
From there, I was able to look into what this test would actually tell us, since Myriam really didn't know either. I found a medical journal that explained Pediatric Nephrotic Syndrome. There was A LOT of medical jargon that I didn't understand. However, the prognosis page was helpful: http://emedicine.medscape.com/article/982920-overview#aw2aab6b2b5.
In the meantime, Aaron and I enrolled in a Patient Payment Program through Athena Labs. We found out that my insurance does not cover genetic testing (although we're still waiting to hear if it will since it is considered maternity). Since the original test cost roughly $3000, they have a program that would allow us to only pay $500 total, rather than the full amount. I have a call into the Lab now to see if the $500 we paid will cover this new test as well, or if it will be another fee.
So, I guess we received good news today. We just don't understand what it all means. I'm hoping that Dr. Ponkey will call and discuss this all with us. If not, she will be receiving a call from me tomorrow. ;-)
Wednesday, November 30, 2011
ENT
We took Hunter to his ENT appointment this afternoon. Poor thing has fluid in his right ear that isn't draining and causing the chronic ear infections. Due the fluid, he is also having difficulty hearing from his right ear. The doctor recommended that he get tubes in his ears (which we expected). We are now awaiting a phone call from the scheduling person to see when we get this procedure done.
I wish Hunter didn't need the tubes as all. It breaks my heart for him to be in pain. The good news is that the tubes are supposed to be a relatively simple procedure that can only benefit him in the long run.
~~~~~
On another note - I received an email yesterday from Myriam, the genetic counselor who arranged the testing for Kenton. She said that the results should be ready by tomorrow. If we don't hear anything, she will call the lab first thing Friday morning so we will know before the weekend (hopefully).
I have such mixed emotions about hearing these results. I love my world of denial and know that everything will become a reality once we hear the results. We are preparing ourselves for the worst, but praying and hoping for the best. Please pray for our peace and strength with the results and the miracle of a perfectly healthy baby
I wish Hunter didn't need the tubes as all. It breaks my heart for him to be in pain. The good news is that the tubes are supposed to be a relatively simple procedure that can only benefit him in the long run.
~~~~~
On another note - I received an email yesterday from Myriam, the genetic counselor who arranged the testing for Kenton. She said that the results should be ready by tomorrow. If we don't hear anything, she will call the lab first thing Friday morning so we will know before the weekend (hopefully).
I have such mixed emotions about hearing these results. I love my world of denial and know that everything will become a reality once we hear the results. We are preparing ourselves for the worst, but praying and hoping for the best. Please pray for our peace and strength with the results and the miracle of a perfectly healthy baby
Friday, November 25, 2011
Doctors ... Doctors ... Doctors
I woke up bright and early Monday morning to go get my blood drawn for the DNA and gene testing on Kenton. Luckily, the line went rather quickly and I was able to have my blood drawn and get to work before school started.
Around 7:50, I received a phone call from Aaron saying that Talan woke up with pink eye. So, off to the doctor Aaron, Talan, Hunter, and my mom went. After some a prescription for eye drops, Aaron was off to work and my mom was left to sanitize. give drops, and try to keep the boys separated as much as possible. For anyone who has spent any time with my boys, you know what a difficult task that was. Hunter loves Talan so much and has to do everything that Talan is doing.
Well, after a sleepless night for boy kids (and consequently us parents), Hunter woke up with goop in his eyes. It was inevitable ... no matter of cleaning and separating was going to stop the spread. So, off to the doctor the boys and my mom went again. My poor mom ... she got the pleasure of trying to get drops into both boys' eyes. She's such a trooper!
I'm very grateful that Dysart decided to jump on board and gave us the Wednesday off before Thanksgiving. Because of this, Aaron and I were able to take the boys to their first dentist appointment. Talan probably should have gone a while ago, but I never thought ahead enough to make an appointment. So, during Fall Break, I was able to make an appointment for the Wednesday before Thanksgiving. We read the Bernstein Bears Go to the Dentist and Talan was so excited to go to the dentist. He did a fantastic job! He let the doctor look in his mouth, did a fluoride treatment, and took x-rays ... all without any complaints and while being extremely cooperative. We were so proud of him! Hunter was a little less cooperative, but I think that is to be expected for his age.
So, after many visits to the doctor. it appears my family is on the mend (for now). We also found out that Talan weighs in at 31 1/2 pounds, while Hunter weighs 28 1/2 pounds. Yep - that's right ... only 3 pounds different!
Around 7:50, I received a phone call from Aaron saying that Talan woke up with pink eye. So, off to the doctor Aaron, Talan, Hunter, and my mom went. After some a prescription for eye drops, Aaron was off to work and my mom was left to sanitize. give drops, and try to keep the boys separated as much as possible. For anyone who has spent any time with my boys, you know what a difficult task that was. Hunter loves Talan so much and has to do everything that Talan is doing.
Well, after a sleepless night for boy kids (and consequently us parents), Hunter woke up with goop in his eyes. It was inevitable ... no matter of cleaning and separating was going to stop the spread. So, off to the doctor the boys and my mom went again. My poor mom ... she got the pleasure of trying to get drops into both boys' eyes. She's such a trooper!
I'm very grateful that Dysart decided to jump on board and gave us the Wednesday off before Thanksgiving. Because of this, Aaron and I were able to take the boys to their first dentist appointment. Talan probably should have gone a while ago, but I never thought ahead enough to make an appointment. So, during Fall Break, I was able to make an appointment for the Wednesday before Thanksgiving. We read the Bernstein Bears Go to the Dentist and Talan was so excited to go to the dentist. He did a fantastic job! He let the doctor look in his mouth, did a fluoride treatment, and took x-rays ... all without any complaints and while being extremely cooperative. We were so proud of him! Hunter was a little less cooperative, but I think that is to be expected for his age.
So, after many visits to the doctor. it appears my family is on the mend (for now). We also found out that Talan weighs in at 31 1/2 pounds, while Hunter weighs 28 1/2 pounds. Yep - that's right ... only 3 pounds different!
Zoolights
We took advantage of our Phoenix Zoo Membership and took the boys to their first Zoolights experience on Wednesday night. We were able to pre-order our tickets, go on the members preview night, as well as go on a weeknight. All of this made great savings for a usually expensive night out ... and it was well-worth the experience. Seeing the excitement and expressions on our boys' faces was priceless.
We splurged and let the boys get some of the light up toys they were selling. Hunter chose a crazy contraption that spins and can create many designs with the lights. Talan chose a butterfly - little did we know that it also sings a horrible Japanese song ... UGH!
There was also an animatronic giraffe from Carden's Children's Hospital. We were able to score some free swag: a first aid kit and a stuffed giraffe for each boy.
Overall, it was a fun night with great memories for the boys, although Kenton didn't enjoy all of the walking (had contractions all the way home until I laid down and rested). What a great way to start off the holiday season!
Noobie
We had a visitor come to our house last night!
Santa sent one of his elves to keep an eye on our boys. He also sent a book that help explains the elf's job at our house and what the rules are to having the elf in our house.
The first thing we had to do what name our elf. Talan decided on the name Noobie (spelling and all). Noobie is full of Christmas magic and flies home to report to Santa each night about the good (and bad) things that the boys did throughout the day. When he returns the next morning, he will be in a different location and the boys will have to find him. If we touch Noobie, it may take away his magic, so our hands have to stay to ourselves. Although Noobie can't talk to us, we can talk to him about what we would like for Christmas and he will let Santa know. On Christmas Eve, Noobie will return to the North Pole, but he will be back the following Christmas to spend some more time with our family.
The boys are so excited and keep looking up and talking to Noobie. This is such a fun, family tradition and I can't wait to see how it develops!
Santa sent one of his elves to keep an eye on our boys. He also sent a book that help explains the elf's job at our house and what the rules are to having the elf in our house.
The first thing we had to do what name our elf. Talan decided on the name Noobie (spelling and all). Noobie is full of Christmas magic and flies home to report to Santa each night about the good (and bad) things that the boys did throughout the day. When he returns the next morning, he will be in a different location and the boys will have to find him. If we touch Noobie, it may take away his magic, so our hands have to stay to ourselves. Although Noobie can't talk to us, we can talk to him about what we would like for Christmas and he will let Santa know. On Christmas Eve, Noobie will return to the North Pole, but he will be back the following Christmas to spend some more time with our family.
The boys are so excited and keep looking up and talking to Noobie. This is such a fun, family tradition and I can't wait to see how it develops!
Saturday, November 19, 2011
How do I respond?
Joy and Pain, all wrapped into one ... that's how I feel about my pregnancy currently. I so want to be excited and find the joy in everything there is about being pregnant and bringing a blessing into this world. However, the all-consuming worry has a way of creeping in and stealing that excitement and joy.
It's so difficult to put on a smiling face and talk about this pregnancy to acquaintances and strangers alike. They ask questions that normally would be no big deal and are completely normal. I know that their hearts are in a good place and just trying to express their congratulations for our baby, but sometimes I just want to hide and act like I'm not pregnant.
"When are you due?" March 31st is my reply. Do I tell them that my doctor is hoping that I make it to March at this point? Would that open up a whole bag of worms that I just am not ready to talk about? Hmmm ... I'm not sure if someone trying to just make small talk really is prepared to hear about all of the possible complications that could arise due to the increased protein in the amniotic fluid and the potential health concerns for Kenton and what he and our family have in store.
"How are you feeling?" Well, I feel emotionally and physically exhausted, a wreck at times, like my word is crumbling around me, like everything I have ever known about being a mother is completely being challenged, and complete worry (to name a few). Yep, not doing that either. So, I'm feeling good, just a little tired.
So, as I reflect upon today, try to enjoy some quiet time to myself (while fighting with an over-tired Talan to give in and fall asleep), and Aaron is out with the guys for a much-needed break, the emotions come flooding back. I know that my feelings are completely normal and to be expected, but I still strongly dislike them (since we don't use the word hate in our house).
Yep ... here's another one of my favorite songs right now that kind of sums up how I'm feeling at this moment. Have I mentioned that music really has a way of speaking straight to my heart? :-)
It's so difficult to put on a smiling face and talk about this pregnancy to acquaintances and strangers alike. They ask questions that normally would be no big deal and are completely normal. I know that their hearts are in a good place and just trying to express their congratulations for our baby, but sometimes I just want to hide and act like I'm not pregnant.
"When are you due?" March 31st is my reply. Do I tell them that my doctor is hoping that I make it to March at this point? Would that open up a whole bag of worms that I just am not ready to talk about? Hmmm ... I'm not sure if someone trying to just make small talk really is prepared to hear about all of the possible complications that could arise due to the increased protein in the amniotic fluid and the potential health concerns for Kenton and what he and our family have in store.
"How are you feeling?" Well, I feel emotionally and physically exhausted, a wreck at times, like my word is crumbling around me, like everything I have ever known about being a mother is completely being challenged, and complete worry (to name a few). Yep, not doing that either. So, I'm feeling good, just a little tired.
So, as I reflect upon today, try to enjoy some quiet time to myself (while fighting with an over-tired Talan to give in and fall asleep), and Aaron is out with the guys for a much-needed break, the emotions come flooding back. I know that my feelings are completely normal and to be expected, but I still strongly dislike them (since we don't use the word hate in our house).
Yep ... here's another one of my favorite songs right now that kind of sums up how I'm feeling at this moment. Have I mentioned that music really has a way of speaking straight to my heart? :-)
Closer
Yesterday, I decided to check in with the "genetic counselor" who ordered the DNA and gene testing to verify the possibly diagnosis of congenital Finnish nephrosis for baby Kenton. For some reason, I just felt like I needed to verify that the test was under way. The samples have been grown and have now been sent over the lab for testing. Hopefully this means that we will know conclusively soon. Unfortunately, Thanksgiving is next week, which could delay our results.
I was also told that I need to go get my blood drawn again to verify that the results are Kenton's and my DNA didn't get mixed into the sample for some reason. So, I took off right after work yesterday to get my blood drawn so I wouldn't delay the results any further. Once I got there, I found out that I can only give my blood Monday-Thursday before 10 in the morning so the courier can take the results to the lab right away. So, I will be up bright and early Monday morning to try to get to the lab and to work by 8. Wish me luck on that one ...
On another note. during my doctor's appointment on Tuesday, I was discussing with my OB about the elevated protein levels in the amniotic fluid. She didn't have the actual test results in her computer yet, but could remember that they were quite elevated. Her office called Friday afternoon with the numbers. The protein levels in the amniotic fluid should be less that 2. Kenton's amniotic fluid had protein levels of 79. Wow - that's all I can say about those numbers! That is a very significant difference!
So, I'll be up way too early on Monday and we will wait some more. We should become professional waiters around here. ;-) Meanwhile, we continue to pray for a miracle and for strength. God does GREAT things!
I was also told that I need to go get my blood drawn again to verify that the results are Kenton's and my DNA didn't get mixed into the sample for some reason. So, I took off right after work yesterday to get my blood drawn so I wouldn't delay the results any further. Once I got there, I found out that I can only give my blood Monday-Thursday before 10 in the morning so the courier can take the results to the lab right away. So, I will be up bright and early Monday morning to try to get to the lab and to work by 8. Wish me luck on that one ...
On another note. during my doctor's appointment on Tuesday, I was discussing with my OB about the elevated protein levels in the amniotic fluid. She didn't have the actual test results in her computer yet, but could remember that they were quite elevated. Her office called Friday afternoon with the numbers. The protein levels in the amniotic fluid should be less that 2. Kenton's amniotic fluid had protein levels of 79. Wow - that's all I can say about those numbers! That is a very significant difference!
So, I'll be up way too early on Monday and we will wait some more. We should become professional waiters around here. ;-) Meanwhile, we continue to pray for a miracle and for strength. God does GREAT things!
Tuesday, November 15, 2011
High-Risk
We had our monthly appointment with my general OB this afternoon. This was the first time that we have seen her since the abnormal blood work came back. It's hard to believe that all of this craziness started just three weeks ago ...
The good news is that Kenton's heartbeat is strong and his kicks and movements are getting much stronger. In fact, on Friday, he kicked me so hard that I shrieked. He is definitely a fighter! ;-)
It was also confirmed that I am now considered to be a high-risk pregnancy. We had already assumed this was the case, but actually hearing the words out of my doctor's mouth kind of sets me back a bit. With the increased protein levels in the amniotic fluid, there is an increased chance of serious complications: preeclampsia, placenta abruption, pre-term labor, and stillbirth. Starting around 30 to 32 weeks (I'm currently 20 weeks along), I will begin doing non-stress tests two times a week to monitor Kenton. With the bi-weekly monitoring, my doctor is sure that they will be able to detect any problems that may arise and act swiftly to ensure Kenton and my safety.
We were also told that in the many years my doctor has been practicing, she has never seen a "case" like mine. In fact, she told us she was taking a long weekend and wanted to look into congenital Finnish nephrosis while she was not working. Hmm ... mixed feelings about being that special ...
On the way to my mom's to have dinner and pick up the boys, I heard this song. It's amazing how God knows exactly what you need to hear. Music really has a way of getting to me, and this song did it tonight ... The chorus completely describes how Aaron and I have both been feeling lately. Although we are waiting for some potentially devastating test results right now, we somehow feel at peace. I'm finally able to sleep somewhat restfully and am beginning to feel some joy about this pregnancy again.
The good news is that Kenton's heartbeat is strong and his kicks and movements are getting much stronger. In fact, on Friday, he kicked me so hard that I shrieked. He is definitely a fighter! ;-)
It was also confirmed that I am now considered to be a high-risk pregnancy. We had already assumed this was the case, but actually hearing the words out of my doctor's mouth kind of sets me back a bit. With the increased protein levels in the amniotic fluid, there is an increased chance of serious complications: preeclampsia, placenta abruption, pre-term labor, and stillbirth. Starting around 30 to 32 weeks (I'm currently 20 weeks along), I will begin doing non-stress tests two times a week to monitor Kenton. With the bi-weekly monitoring, my doctor is sure that they will be able to detect any problems that may arise and act swiftly to ensure Kenton and my safety.
We were also told that in the many years my doctor has been practicing, she has never seen a "case" like mine. In fact, she told us she was taking a long weekend and wanted to look into congenital Finnish nephrosis while she was not working. Hmm ... mixed feelings about being that special ...
(Chorus)
Whatever you're doing inside of me
It feels like chaos somehow there's peace
It's hard to surrender to what I can't see
but I'm giving in to something heavenly
Grateful
With Thanksgiving around the corner, as well as the chaos going on in our lives right now, I have been really trying to stop and reflect about everything in my life that is truly a blessing.
- Support and Prayers: I cannot express how overwhelmed I feel by the outpouring of emails and support from everyone since we've received the news about Kenton. I feel so blessed to have so many people praying for our family, even from some who I haven't talked to in a while. Please know that your emails, kind words, support, and prayers are very much appreciated - even more than my words can express.
- Strong-Willed Boys: Yep - that's what I said. As I sit and struggle with the stubbornness of Talan and Hunter over simple tasks every day, I have actually come to appreciate their never-give-up attitude. Both of my boys commit themselves to what they want with all of their heart and will not give up without a fight. If Kenton is anything like his brothers, he will be able to fight anything that is thrown at him and come out stronger.
- My Fabulous Husband: Aaron has been my rock through this entire pregnancy. My hormones have been all over the place and I have been emotional since the beginning. Add on the stress of working, lots of illnesses, and now the possible illness of Kenton, I am definitely not stable. Aaron has been so patient with me and truly faithful and understanding. In fact, just last night, I received my third 17 P injection and was feeling nauseated. Rather than go to our neighborhood group as we had planned, I ended up on the couch drifting off to sleep. Meanwhile, Aaron and the boys were outside for over an hour spending time together. Aaron is such a great father and our family's rock. It seems as though whatever struggles we go through, it just makes us stronger. I fall more and more in love with him everyday.
- My Mommy: My mom has always been there for me, not matter what. This new trial in our lives is no exception. The daily messages and just being present in our lives means so much. I can call on her no matter what I need and she will be there ... to have a sleepover with the kids so Aaron and I can process difficult news, to possibly taking Hunter to the doctor for us again today for another ear infection. I love you, Mom!
- My (Support) Team at Work: To say that this school year has been abnormal is an understatement. My usually healthy family seems to be falling apart. There's been one thing after another and my team at work has been extremely understanding. They are always willing to listen or help out unselfishly. God put me in 2nd grade this year for a reason and I am eternally grateful. I just hope that one day I can be as great of a friend as they have all been to me.
Tuesday, November 8, 2011
The Final Test
We are officially going to do the final test to tell us if Kenton has congenital Finnish nephrosis. I had a difficult time understanding the accent of the woman I was speaking with today, but I got a general idea of what the test would entail. The lab would use a sample of the amniotic fluid and "grow" cells in two different containers. After the cells grow to the proper size, they would then compare the genes to see if there are any abnormalities that would indicate congenital Finnish nephrosis. We are still not guaranteed an answer to what is causing the protein in the amniotic fluid, but this hopefully will provide more answers.
So, it's another waiting game. She told me it could take anywhere from 2-4 weeks for results. In the meantime, we pray for answers, healing, and strength.
So, it's another waiting game. She told me it could take anywhere from 2-4 weeks for results. In the meantime, we pray for answers, healing, and strength.
So Many Emotions
I had a rough day yesterday. I had to vocalize the news about Kenton's possible diagnosis for the first time and I think the news finally soaked in. I was an emotional mess and trying so hard to hold it together ... and not very well at that. It's so hard to process that the baby I am carrying, who moves and wiggles constantly, is sick. He's perfectly healthy in my belly ... but that won't be the case when he is born. There are so many worries and concerns that I have for my family, some which I cannot even voice yet. I have such mixed emotions, especially with not having an "official" diagnosis.
Today, however. I started the day feeling renewed and positive. I know that God has great plans for my family. I pray every hour of the day for a miracle and complete healing of Kenton. God can work miracles and has so many times and I just pray that he blesses our family with one of those miracles.
Today, however. I started the day feeling renewed and positive. I know that God has great plans for my family. I pray every hour of the day for a miracle and complete healing of Kenton. God can work miracles and has so many times and I just pray that he blesses our family with one of those miracles.
- “For with God nothing will be impossible.” (Luke 1:37)
- But He said, “The things which are impossible with men are possible with God.” (Luke 18:27)
- “Now to Him who is able to do exceedingly abundantly above all that we ask or think, according to the power that works in us.” (Ephesians 3:20)
Monday, November 7, 2011
The Sporadic and Final Amnio and Blood Test Results
Here's a glimpse at our past two weeks as the blood work and amnio results started to come back:
- Thursday, 10/27: My blood work came back. Initially the protein levels came back from the quad screen at a 7.5, when we want them to be around 1.0. This time, the protein levels were at a 7.2. This tells us that there is definitely something wrong, we just don't don't know if it's from me or from Kenton. We also received some preliminary amnio results as well. The amniotic fluid did contain protein, which tells us that the baby is excreting protein. We now need to wait for more results to see if Kenton does have spina bifida, or something else that is causing him to not absorb protein.
- Friday, 10/28: We received some additional amnio results on the chromosomes. Kenton has no signs of any chromosomal disorders, such as down syndrome or Trisomy 18.
- Sunday, 11/6: The doctor called at 8:30 PM to give us the the final amnio results are back. The good news is that Kenton does not have spina bifida. The bad news is that the doctor is leaning towards a rare genetic disorder with Kenton's kidneys called "congenital Finnish nephrosis." In order to confirm the diagnosis, there needs to be some gene testing on the amniotic fluid taken from the amnio. We are currently in another waiting game to see if insurance will cover this test.
Sunday, November 6, 2011
The BIG Ultrasound
After a restless night, Aaron and I dropped the kids off at our fabulous, supportive sitter and headed to get our ultrasound. On the way to the appointment. we decided that our little one needed a name. If we got our baby girl, she would be named Brenley Hope. If we were blessed with another boy, his name would be Kenton Joseph. We both were trying to be as calm and cool as possible, but I must admit, my nerves were getting the best of me.
The ultrasound seemed to go rather smoothly. We got A LOT of pictures of the baby's spine (which to us looked okay, but we're not professionals by any means) and tried to get a few pictures of the baby's face. However, he/she was not properly cooperating for a good, clear picture.
After the technician left, she came back two more times to take more pictures of the babies lips and palette, my liver, and my ovaries. We were feeling okay with everything when she initially left; however, two follow-up visits for more pictures left me very uneasy again.
We were then introduced to Dr. Ponke, a fabulous doctor who truly cares about her patients. She took the time to sit down and discuss the initial quad screen results, as well as the ultrasound findings. With the quad screen, they are looking at multiple levels in my blood. When they draw my blood, they not only get my blood, but also are able to get some of the blood flowing through the baby. The protein levels in the blood draw, which should be around 1.0, were elevated to a 7.5. With the protein levels being so high, this put the baby at 1:8 chance of having spina bifida. The good news - the ultrasound showed NO evidence of the baby having spina bifida. This is why she had the tech come back and take more pictures ... why were the protein levels so high? The good news - all of the follow-up pictures looked good as well.
So, what could it be? Could it just be a false test result? Could it be spina bifida that the ultrasound just didn't show? Could it be a problem with the baby's kidneys? Could it be that the baby has a rare skin disease? Could I be sick and we just not know it? So many unanswered questions.
After much discussion and deliberation, we decided to draw more blood and re-run the test. However, this wouldn't tell us conclusively if there is a problem with me, is it with the baby, or is there really a problem at all? We also decided to do an amnio so we could hopefully get more conclusive results. While we were waiting for the amnio, the lab re-ran the original blood work, just to make sure there wasn't a mistake. They came back the same - 7.5 protein level.
After the amnio, Aaron and I grabbed some lunch and headed home. I laid down and took a much needed nap while Aaron went to work. I was ordered to take it easy for the next 24 hours and to drink plenty of water. We would hear about the blood work in a couple of days, some inital amnio results in a few days after that, and then the final results in about two weeks time.
Let the praying and waiting begin ... for Kenton Joseph!
The ultrasound seemed to go rather smoothly. We got A LOT of pictures of the baby's spine (which to us looked okay, but we're not professionals by any means) and tried to get a few pictures of the baby's face. However, he/she was not properly cooperating for a good, clear picture.
We were then introduced to Dr. Ponke, a fabulous doctor who truly cares about her patients. She took the time to sit down and discuss the initial quad screen results, as well as the ultrasound findings. With the quad screen, they are looking at multiple levels in my blood. When they draw my blood, they not only get my blood, but also are able to get some of the blood flowing through the baby. The protein levels in the blood draw, which should be around 1.0, were elevated to a 7.5. With the protein levels being so high, this put the baby at 1:8 chance of having spina bifida. The good news - the ultrasound showed NO evidence of the baby having spina bifida. This is why she had the tech come back and take more pictures ... why were the protein levels so high? The good news - all of the follow-up pictures looked good as well.
So, what could it be? Could it just be a false test result? Could it be spina bifida that the ultrasound just didn't show? Could it be a problem with the baby's kidneys? Could it be that the baby has a rare skin disease? Could I be sick and we just not know it? So many unanswered questions.
After much discussion and deliberation, we decided to draw more blood and re-run the test. However, this wouldn't tell us conclusively if there is a problem with me, is it with the baby, or is there really a problem at all? We also decided to do an amnio so we could hopefully get more conclusive results. While we were waiting for the amnio, the lab re-ran the original blood work, just to make sure there wasn't a mistake. They came back the same - 7.5 protein level.
After the amnio, Aaron and I grabbed some lunch and headed home. I laid down and took a much needed nap while Aaron went to work. I was ordered to take it easy for the next 24 hours and to drink plenty of water. We would hear about the blood work in a couple of days, some inital amnio results in a few days after that, and then the final results in about two weeks time.
Let the praying and waiting begin ... for Kenton Joseph!
Saturday, November 5, 2011
The Infamous Phone Call
Tuesday, October 25th, 2011 was a ROUGH day.
The day began just like the any other day. I got up, got ready, took the boys to the sitter, and went to work. Around 9 that morning, I started having some minor contractions. I began drinking water and tried to stay off my feet. I had contractions around the same time frame in Hunter's pregnancy as well. I knew it wasn't anything too concerning ... just my body's way of saying slow down, put your feet up, and drink some water. Luckily, I have a fabulous team who helped take my kids to their specials and did my lunch duty so I could try to stay off of my feet as much as possible. Although I knew nothing was terribly wrong, and as weird as it sounds, it was exhausting trying to stay off of my feet with 29 students in a classroom and trying to drink water.
Around 1:00, my OB called to discuss the 17 P injections. I stepped out of my classroom so I could have a private conversation without too many distractions and little ears listening ... this turned out to be a great decision on my part. I told Dr. Branaman that I was reading some confusing information on the Internet and just wanted some accurate information about the possible side effects to me and the baby, as well as why she thought it would be a good idea for me. By the end of the conversation, I decided I would give it a try. It couldn't hurt to try to help our little one "cook" a little longer.
Just as I thought we were about to get off the phone, Dr. Branaman told me that the quad screen results had come back from last week. I heard something I never thought I'd hear: "abnormal" results and "possible spina bifida." As I was trying to process the news, she did her best to reassure me that this test can give false positives for a number of reasons and it is definitely not conclusive. She asked when I had my anatomy ultrasound scheduled. Since my ultrasound wasn't scheudled for another week, on October 31st, she said that she didn't want us to have to wait that long to find out about the spina bifida. She found out our availability, was going to have one of her nurses see if she could get us in sooner, and then we got off the phone.
So, now I wait ... with a classroom of students ... as a try to process some news that no parent wants to hear. I tried to go about my afternoon and act as if everything was fine, but probably not too convincingly. I called Aaron and gave him a heads up as to what I had just heard. As to be expected, he was also in shock. The nurse called back and we had our ultrasound appointment first thing the next morning, Wednesday, October 26th. It's amazing how quickly a doctor can get an appointment scheduled!
My teammates could tell something wasn't quite right and became concerned. (Have I mentioned that I have the BEST, most SUPPORTIVE team?) They helped me get through the afternoon, as I planned for a sub and lived in my shock.
Of course, in the age of the Internet, Aaron and I both went online and looked up spina bifida and what that could mean for our precious baby. Spina bifida could be as severe as partial paralysis and other side effects, to as moderate as no one really even noticing that something is wrong. Through many prayers throughout the afternoon and evening, we tried to enjoy our healthy boys at home and tried not to think about what was really in the back of both of our minds.
The day began just like the any other day. I got up, got ready, took the boys to the sitter, and went to work. Around 9 that morning, I started having some minor contractions. I began drinking water and tried to stay off my feet. I had contractions around the same time frame in Hunter's pregnancy as well. I knew it wasn't anything too concerning ... just my body's way of saying slow down, put your feet up, and drink some water. Luckily, I have a fabulous team who helped take my kids to their specials and did my lunch duty so I could try to stay off of my feet as much as possible. Although I knew nothing was terribly wrong, and as weird as it sounds, it was exhausting trying to stay off of my feet with 29 students in a classroom and trying to drink water.
Around 1:00, my OB called to discuss the 17 P injections. I stepped out of my classroom so I could have a private conversation without too many distractions and little ears listening ... this turned out to be a great decision on my part. I told Dr. Branaman that I was reading some confusing information on the Internet and just wanted some accurate information about the possible side effects to me and the baby, as well as why she thought it would be a good idea for me. By the end of the conversation, I decided I would give it a try. It couldn't hurt to try to help our little one "cook" a little longer.
Just as I thought we were about to get off the phone, Dr. Branaman told me that the quad screen results had come back from last week. I heard something I never thought I'd hear: "abnormal" results and "possible spina bifida." As I was trying to process the news, she did her best to reassure me that this test can give false positives for a number of reasons and it is definitely not conclusive. She asked when I had my anatomy ultrasound scheduled. Since my ultrasound wasn't scheudled for another week, on October 31st, she said that she didn't want us to have to wait that long to find out about the spina bifida. She found out our availability, was going to have one of her nurses see if she could get us in sooner, and then we got off the phone.
So, now I wait ... with a classroom of students ... as a try to process some news that no parent wants to hear. I tried to go about my afternoon and act as if everything was fine, but probably not too convincingly. I called Aaron and gave him a heads up as to what I had just heard. As to be expected, he was also in shock. The nurse called back and we had our ultrasound appointment first thing the next morning, Wednesday, October 26th. It's amazing how quickly a doctor can get an appointment scheduled!
My teammates could tell something wasn't quite right and became concerned. (Have I mentioned that I have the BEST, most SUPPORTIVE team?) They helped me get through the afternoon, as I planned for a sub and lived in my shock.
Of course, in the age of the Internet, Aaron and I both went online and looked up spina bifida and what that could mean for our precious baby. Spina bifida could be as severe as partial paralysis and other side effects, to as moderate as no one really even noticing that something is wrong. Through many prayers throughout the afternoon and evening, we tried to enjoy our healthy boys at home and tried not to think about what was really in the back of both of our minds.
Wednesday, November 2, 2011
17 P
On Tuesday, October 18th, Aaron and I went to our 16 week appointment with our OB. Dr. Branaman was out on a delivery, so we saw one of the nurse practitioners instead. We were able to listen to our little one's heartbeat and I got some blood drawn for the "quad screen" blood test.
The nurse also discussed "17 P" injections with us. We had never heard of this, but the idea behind 17 P is to help prolong pregnancy and prevent preterm birth in women who have a history of preterm birth. Since Talan was born at 36 weeks and Hunter was born at 36 weeks and 6 days, I was considered a candidate for the injections. The injections were to take place between 16 and 18 weeks and would continue weekly until 36 weeks. The nurse was going to discuss it with Dr. Branaman and give us a call on Thursday.
Aaron and I went home and discussed the injections. We weren't necessarily convinced if I needed the injections since Hunter was only one day away from being considered full term. I also couldn't find out much information online about the injections and was a little uneasy about the whole thing.
On Thursday, I received a voice mail telling me that my doctor had reviewed everything and decided that I would be a good candidate for the 17 P injections and would like to get me set-up with home health care to get them started. Home health care called me the same day to verify my insurance and make sure that everything would be covered. I still wasn't convinced I was going to get the injections at this point, but didn't think it would hurt to start the ball rolling with insurance.
Meanwhile, I put in a call to my OB so I could discuss my concerns with her more before I made my final decision. We were finally able to touch base on Tuesday of the next week. However, I got a little more than I bargained for with that phone call ...
The nurse also discussed "17 P" injections with us. We had never heard of this, but the idea behind 17 P is to help prolong pregnancy and prevent preterm birth in women who have a history of preterm birth. Since Talan was born at 36 weeks and Hunter was born at 36 weeks and 6 days, I was considered a candidate for the injections. The injections were to take place between 16 and 18 weeks and would continue weekly until 36 weeks. The nurse was going to discuss it with Dr. Branaman and give us a call on Thursday.
Aaron and I went home and discussed the injections. We weren't necessarily convinced if I needed the injections since Hunter was only one day away from being considered full term. I also couldn't find out much information online about the injections and was a little uneasy about the whole thing.
On Thursday, I received a voice mail telling me that my doctor had reviewed everything and decided that I would be a good candidate for the 17 P injections and would like to get me set-up with home health care to get them started. Home health care called me the same day to verify my insurance and make sure that everything would be covered. I still wasn't convinced I was going to get the injections at this point, but didn't think it would hurt to start the ball rolling with insurance.
Meanwhile, I put in a call to my OB so I could discuss my concerns with her more before I made my final decision. We were finally able to touch base on Tuesday of the next week. However, I got a little more than I bargained for with that phone call ...
And so it begins ...
Since we have started attending CCV regularly, it seems like our lives have been filled with a whirlwind of activity. Below is a brief synopsis of the craziness:
- Aaron and I decided it was time for us to try to add another little one to our family. On July 26th, we found out we were expecting!
- I "looped" up to 2nd grade with my 1st grade class. Although I had many of the same students, I had a whole new curriculum to learn. Luckily, God put a wonderful group of supportive women on my team at work. They must be wonderful to deal with all of my hormones! :)
- I got sick a couple of weeks into the school year. What was initially a cold, turned into bronchitis, and eventually an ear infection. After a month of being sick and two different rounds of antibiotics, I finally started to feel better.
- During this time, Hunter and Talan came down with a cold as well. Hunter ended up having pneumonia and an ear infection. Talan was able to get over his cold on his own and never became too sick.
- The matriarch of the Rockey family, my grandmother Eloise, joined my dad, my aunt, and her husband in Heaven on September 20th. Luckily, all four of her grandchildren were able to be here her final weekend and see her one last time. Unfortunately, Travis had to fly back to North Carolina and Hunter was diagnosed with pneumonia during this time, so we weren't there with her at the end. However, Grandma knew that she was loved and Debbie and Michelle did an amazing job taking care of her the past year. As weird as it is knowing that it truly is just us grandchildren left in the family, it is reassuring knowing that she is at peace and in Heaven. On October 31st, we had an intimate memorial for Grandma once Travis, Emily, and Claire could come back to town. It was very nice and we were able to remember the fond memories we all had of Grandma.
- On Tuesday, 11/1/11, I took Hunter back to the doctor for his 4th ear infection since school started. We all were concerned about the frequent ear infections, especially since they've all been in his right ear, poor thing. We were called today and have an appointment at an ENT on November 30th to discuss possible tubes in his ears.
Rededication
For Easter service, we decided to try out CCV's Surprise campus. It used to be Parkview Church, which we went to for a while when we first moved to Surprise. For one reason or another, we never got too involved and stopped going.
Well, it was time for the return of the Zsilavec's - plus 2 more. We really enjoyed CCV, but never wanted to drive all the way out to the Peoria campus. This was an interesting idea to us - watching church on a screen rather than actually having the pastor in front of us. The Easter service was really good and we were intrigued to try it out on a "regular" weekend without all of the fuss.
We returned for a few more services. On Mother's Day, we decided we were going to try to make it a part of our ritual to go to church every Sunday. Talan loved going, but it was a bit of a tough adjustment for Hunter. Aaron and I attended the Starting Point class, where you learn more about CCV and their beliefs. Needless to say, that class sold us.
Aaron made a huge commitment and was baptized, which our boys were able to witness. I began serving in the children's ministry and teaching a Kindergarten class every Sunday. The boys have grown to love church and Talan loves reading his Bible and learning his memory verses.
Church and God have become a huge part of our lives now. I am really trying to make deliberate decisions in my life and truly think through what I say and do (which is a challenge, but I'm working on it with help from above). We try to talk about God and Jesus and use them as examples for our children ... and try to do our best to be good examples to them as well.
God has a plan for our family and put this all in motion. He knew that we would need our faith soon and wanted to make sure that we were in a good place.
Well, it was time for the return of the Zsilavec's - plus 2 more. We really enjoyed CCV, but never wanted to drive all the way out to the Peoria campus. This was an interesting idea to us - watching church on a screen rather than actually having the pastor in front of us. The Easter service was really good and we were intrigued to try it out on a "regular" weekend without all of the fuss.
We returned for a few more services. On Mother's Day, we decided we were going to try to make it a part of our ritual to go to church every Sunday. Talan loved going, but it was a bit of a tough adjustment for Hunter. Aaron and I attended the Starting Point class, where you learn more about CCV and their beliefs. Needless to say, that class sold us.
Aaron made a huge commitment and was baptized, which our boys were able to witness. I began serving in the children's ministry and teaching a Kindergarten class every Sunday. The boys have grown to love church and Talan loves reading his Bible and learning his memory verses.
Church and God have become a huge part of our lives now. I am really trying to make deliberate decisions in my life and truly think through what I say and do (which is a challenge, but I'm working on it with help from above). We try to talk about God and Jesus and use them as examples for our children ... and try to do our best to be good examples to them as well.
God has a plan for our family and put this all in motion. He knew that we would need our faith soon and wanted to make sure that we were in a good place.
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