If you've never had an MRI, it's a fairly terrifying experience in and of itself. Even more so when you're 21 weeks pregnant with twins and claustrophobic. I had previously had one MRI to check on the discs in my neck due to pain for a chiropractic visit. The chiropractor refused (as any good chiro should) to do any real work on my painful neck until she could see just what was going on. I believe that MRI lasted about 20 minutes and I cried through the whole thing.
My MRI ended up being scheduled for 1 p.m. on a Friday. We were told to come to the hospital an hour early and check in at the front desk. We were brought into an office to discuss financials (we have excellent insurance luckily, so there wasn't much to discuss) and then were sent on our way to the radiology department. Mike and Zachary were with me. They set up camp in the children's waiting room within the Radiology department where Zachary contented himself eating fruit from the hospital cafeteria and watching Disney Junior.
The technician came and got me, explaining that it would likely be about an hour long procedure depending on how well the babies cooperated, and then we would be on our way.
I was placed in the tube and it started. The only thing I remember was that it felt like it took forever. And I was truly worried that he fully intended on keeping me in this tiny tube until I gave birth. I had a ball in my hand that was wired to the room he was in, so that in the event that I panicked, I could squeeze that and he would let me out. My entire body went numb. At one point I opened my eyes and the tube was so close to my face that I almost squeezed the ball. I knew, though, that if he brought me out, I would refuse to go back in, so instead, I closed my eyes and started picking a boy name and girl name from every letter of the alphabet to keep my mind off what was happening.
MRIs are loud, also. Terribly loud. There was a machine somewhere in the room making a chirping noise. When the MRI would quiet down, I would hear the chirping. In my mind I pretended I was outside, laying in the grass listening to the birds chirp. At one point, the technician got on and said he was having some trouble getting pictures because the babies were moving a lot. He told me to hang on, he was going to take the pictures to the Radiologist and see if what they had was good enough.
I waited for what seemed like another eternity. He came back and said, "Sorry, let me try a couple more things and then I promise I'll be done." I wanted to cry. Instead I just said "OK" and started breathing again.
Finally, FINALLY, I felt the table start to pull out from inside the tube of terror and I heard him come back into the room. He handed me my glasses and helped me sit up. He said, "Wow you're a trooper! Let me take you back to your locker." Then I was done. Back to the waiting room where Mike was sitting, slightly panicked. I had been in the machine for over 2 hours. Over. 2. Hours.
Mike handed me Zachary and dashed off to work. Now we had nothing to do but wait for the results.
Monday, November 24, 2014
New High Risk Doctor
We went into the new high risk doctor with some trepidation. Having only ever known the other doctor, we were fairly nervous that this was just how high risk doctors were and that I would spend the remainder of my pregnancy fighting.
We were pleasantly surprised when we were called back to the room within 5 minutes of our appointment time. We would wait at minimum an hour at the other office. We met a very sweet and caring ultrasound technician who listened to our concerns about the other doctor while she performed the anatomy scan. This took a fairly significant amount of time, considering that we had two babies in there. Mike was getting antsy because we had had to schedule this appointment for the afternoon and he had to be at work soon. Our friend was watching Zachary for us so we didn't have to worry about him interrupting.
Once the ultrasound technician was done, she went to get the new high risk doctor. Mike had to leave to get to work, so I was by myself when the new doctor confirmed the findings that Dr. Amnio had suspected. It appeared Baby B, our boy, had two enlarged brain ventricles that appeared to be filling with fluid and may indicate a problem. The doctor sat down and let me know that his suggestion was a fetal MRI as the next step and also to perform some bloodwork. He suggested the same blood test as the other physician, but I would have no out of pocket cost for it. Because this office is part of the large hospital group in our city, they had a deal with the lab that the lab would accept whatever amount my insurance paid, even if it was zero dollars.
The doctor also suggested that we meet with their on-staff genetic counselor to get an idea of what we may be in for. While the diagnosis was the same as the previous office, the care was infinitely better. This doctor was warm, didn't rush me, answered every question I threw at him as my brain tried to process that there might be something wrong, and even hugged me at the end of our consult when I started crying. He told me, "I wish I could just come in here and say congrats see you next month. I hate that we have to start our journey this way." He remembered that I was a human and that I had just found out something that may alter my (and my husband's) parenting journey forever. He told me not to Google, but that when I went home and did, CHOP (Children's Hospital of Philadelphia) and the Hydrocephalus Association would be good places to start.
I received a call from the large hospital downtown a few days later and scheduled my fetal MRI. I also scheduled a fetal echocardiogram ultrasound through my high risk doctor to look at Baby B's heart and make sure he was developing normally, an appointment with the genetic counselor, and took home information about hydrocephalus. I was overwhelmed. I was terrified.
We were pleasantly surprised when we were called back to the room within 5 minutes of our appointment time. We would wait at minimum an hour at the other office. We met a very sweet and caring ultrasound technician who listened to our concerns about the other doctor while she performed the anatomy scan. This took a fairly significant amount of time, considering that we had two babies in there. Mike was getting antsy because we had had to schedule this appointment for the afternoon and he had to be at work soon. Our friend was watching Zachary for us so we didn't have to worry about him interrupting.
Once the ultrasound technician was done, she went to get the new high risk doctor. Mike had to leave to get to work, so I was by myself when the new doctor confirmed the findings that Dr. Amnio had suspected. It appeared Baby B, our boy, had two enlarged brain ventricles that appeared to be filling with fluid and may indicate a problem. The doctor sat down and let me know that his suggestion was a fetal MRI as the next step and also to perform some bloodwork. He suggested the same blood test as the other physician, but I would have no out of pocket cost for it. Because this office is part of the large hospital group in our city, they had a deal with the lab that the lab would accept whatever amount my insurance paid, even if it was zero dollars.
The doctor also suggested that we meet with their on-staff genetic counselor to get an idea of what we may be in for. While the diagnosis was the same as the previous office, the care was infinitely better. This doctor was warm, didn't rush me, answered every question I threw at him as my brain tried to process that there might be something wrong, and even hugged me at the end of our consult when I started crying. He told me, "I wish I could just come in here and say congrats see you next month. I hate that we have to start our journey this way." He remembered that I was a human and that I had just found out something that may alter my (and my husband's) parenting journey forever. He told me not to Google, but that when I went home and did, CHOP (Children's Hospital of Philadelphia) and the Hydrocephalus Association would be good places to start.
I received a call from the large hospital downtown a few days later and scheduled my fetal MRI. I also scheduled a fetal echocardiogram ultrasound through my high risk doctor to look at Baby B's heart and make sure he was developing normally, an appointment with the genetic counselor, and took home information about hydrocephalus. I was overwhelmed. I was terrified.
Thursday, November 6, 2014
High Risk Doctor
Once I was transferred from my RE to the OB, I started following a normal pregnancy appointment routine with the exception that I would also have to see an MFM for the duration of my pregnancy. An MFM is a maternal fetal medicine physician - or someone used to dealing with higher risk pregnancies. Because I was pregnant with multiples and because I was quickly approaching what the obstetretics deem "advanced maternal age," it was determined an MFM should help follow the pregnancy.
In my pregnancy with Zachary, I had gone to an MFM for a couple of visits because I wanted to get the NT scan. The physician that I saw is one of the only high risk pregnancy physicians in our area (and I live in a pretty large metropolitan area!) and so many of my co-workers had also gone to him for high risk pregnancies. He was deemed Dr. Amnio by these co-workers because of his fondness for putting significant pressure on patients to have an amniocentesis. All of the co-workers that had gone to him for the duration of his pregnancy had been asked multiple times to have an amniocentesis. I figured that I was walking in fully aware of this and that he wouldn't pressure me for anything.
We went through the NT scan with little issues, both babies were measuring perfectly and we were scheduled to come back in a month.
The time for the next appointment came and we had another ultrasound. The thing about high risk pregnancies is you get a TON of ultrasounds. I get to see the babies at least once a month. It's kind of cool. Again, the babies were measuring completely normal and on track, but this time, Dr. Amnio saw a problem. I had been expecting this conversation but still felt instant anger at him.
"Baby B has what appear to be enlarged brain ventricles." What did that mean? Normal ventrical range fell under 10mm. Baby B had ventricles currently measuring 9.5mm. Sooooo...he's still at the high end of normal? Yes but I think we should get this very expensive and not covered by insurance blood test. And if that comes back with an issue, we'll want to look at fetal MRI or amniocentesis. There it was.
After some arguments with the doctor (in the middle of his waiting room no less), it was determined that I would do the quad screen initially because that was covered by insurance. While it had a higher false positive rate than the other blood test, at least we could start with the least expensive option and go forward if we needed it.
I gave the blood and we sat on pins and needles for a week while we waited for the results. When the results came in (negative for all three major trisomies and negative for neural tube defects), I decided I would not step foot in this physician's office again. I knew there was another MFM that I could be referred to and at my next OB appointment, I asked to be referred. Within a week I had my appointment at the new physician scheduled and was moving on.
In my pregnancy with Zachary, I had gone to an MFM for a couple of visits because I wanted to get the NT scan. The physician that I saw is one of the only high risk pregnancy physicians in our area (and I live in a pretty large metropolitan area!) and so many of my co-workers had also gone to him for high risk pregnancies. He was deemed Dr. Amnio by these co-workers because of his fondness for putting significant pressure on patients to have an amniocentesis. All of the co-workers that had gone to him for the duration of his pregnancy had been asked multiple times to have an amniocentesis. I figured that I was walking in fully aware of this and that he wouldn't pressure me for anything.
We went through the NT scan with little issues, both babies were measuring perfectly and we were scheduled to come back in a month.
The time for the next appointment came and we had another ultrasound. The thing about high risk pregnancies is you get a TON of ultrasounds. I get to see the babies at least once a month. It's kind of cool. Again, the babies were measuring completely normal and on track, but this time, Dr. Amnio saw a problem. I had been expecting this conversation but still felt instant anger at him.
"Baby B has what appear to be enlarged brain ventricles." What did that mean? Normal ventrical range fell under 10mm. Baby B had ventricles currently measuring 9.5mm. Sooooo...he's still at the high end of normal? Yes but I think we should get this very expensive and not covered by insurance blood test. And if that comes back with an issue, we'll want to look at fetal MRI or amniocentesis. There it was.
After some arguments with the doctor (in the middle of his waiting room no less), it was determined that I would do the quad screen initially because that was covered by insurance. While it had a higher false positive rate than the other blood test, at least we could start with the least expensive option and go forward if we needed it.
I gave the blood and we sat on pins and needles for a week while we waited for the results. When the results came in (negative for all three major trisomies and negative for neural tube defects), I decided I would not step foot in this physician's office again. I knew there was another MFM that I could be referred to and at my next OB appointment, I asked to be referred. Within a week I had my appointment at the new physician scheduled and was moving on.
Monday, November 3, 2014
The Way Infertility Feels
It was only after we "beat" infertility that I began to reflect on just how much infertility steals from you. It is often not viewed as a "real" medical issue. I recently watched a story on the news about how a couple has been trying to get pregnant for years, has spent over $100K on fertility treatments (including using donor eggs to increase the success rate) and was now crowd funding $15K for adoption. The comments on the article's Facebook listing were downright mean. "Why not just adopt at the beginning?" "Why use fertility treatment? You should just pray more and rely on God's timing." "Just relax."
What I realized when we were going through fertility treatment was that nobody could measure how badly we wanted a child except us. And that the vast majority of fertility problems were caused by legitimate medical reasons. And that insurance companies (with the exceptions of some states that require fertility coverage) do not care about those issues unless you have good insurance. And that OB/Gyn physicians typically know very little about getting you pregnant. They are VERY good at keeping you pregnant, monitoring typical gynecological health issues, and delivering babies, but their expertise does not touch getting pregnant when nature doesn't take it's course. That's why there is a specialized field just for Reproductive Endocrinologists.
I didn't realize how beat down I was until the first trip to the doctor. Calling and scheduling the appointment was very scary. Going was even worse. After our consult with our amazing doctor, he ordered about a thousand vials of blood to be taken. The nurse put her hand on my shoulder and said, "Don't worry honey, when we get you pregnant, we'll transfer all these results to your OB so you should hopefully have less bloodwork to do." My eyes teared up. She said when they get me pregnant.
It was hard to do the treatments month after month and still have no results. I had huge hopes once we finally got through all the testing and started actually doing the treatments. I hoped that it would only take one cycle of treatments and everything would be okay. When I saw the negative pregnancy test that month, it hurt. Badly. It is a hopeless feeling. And I felt like a failure. I felt like less than a woman. It's supposed to be easy. You're supposed to be able to get pregnant and carry a baby. And I was broken. I cried so many times to my husband about my broken body and remember him holding me and telling me I wasn't broken.
I know it was hard on him too. Especially because his numbers came back so amazing. Nothing was wrong with him, nothing. And I know he wished he could take the pain away from me. I remember him telling me that he was hoping against hope that when the tests came back it was him. Something would be wrong with him. Because I'm too hard on myself and I'm too perfection driven. He knew I would tear myself apart if it was something wrong with me.
It's even harder with secondary infertility because people understand you seeking treatment even less. And it's harder to realize you need help. I didn't need help the first time. It took longer than I thought but we did it on our own. It was bizarre to me that we would need help with something we had already done. And society at large along with the infertility community both look down on you. The comments are the same - "at least you already have one" "how selfish, just love the one you have" "you don't want to lose all your money in fertility treatments when you have another one to care for."
Even after getting pregnant, it was hard to actually accept that it happened. I kept the positive pregnancy test but I only ever took one. I thought I would take a million just to keep proving to myself that I was actually pregnant, but the truth was that I was terrified that I would take a test and it would be negative and I would have to start all over again. I just worried every time a symptom diminished or disappeared. I worried about waiting until 7 weeks to search for a heartbeat. I analyzed everything my body was doing to "prove" to myself that I was pregnant. I sought out the advice of my friend who had suggested fertility treatments in the first place and her response was "I would expect no less from someone with a previous loss and infertility in her history. It's normal and I understand." She and my husband kept me sane until the ultrasound where we saw the heartbeats.
What I realized when we were going through fertility treatment was that nobody could measure how badly we wanted a child except us. And that the vast majority of fertility problems were caused by legitimate medical reasons. And that insurance companies (with the exceptions of some states that require fertility coverage) do not care about those issues unless you have good insurance. And that OB/Gyn physicians typically know very little about getting you pregnant. They are VERY good at keeping you pregnant, monitoring typical gynecological health issues, and delivering babies, but their expertise does not touch getting pregnant when nature doesn't take it's course. That's why there is a specialized field just for Reproductive Endocrinologists.
I didn't realize how beat down I was until the first trip to the doctor. Calling and scheduling the appointment was very scary. Going was even worse. After our consult with our amazing doctor, he ordered about a thousand vials of blood to be taken. The nurse put her hand on my shoulder and said, "Don't worry honey, when we get you pregnant, we'll transfer all these results to your OB so you should hopefully have less bloodwork to do." My eyes teared up. She said when they get me pregnant.
It was hard to do the treatments month after month and still have no results. I had huge hopes once we finally got through all the testing and started actually doing the treatments. I hoped that it would only take one cycle of treatments and everything would be okay. When I saw the negative pregnancy test that month, it hurt. Badly. It is a hopeless feeling. And I felt like a failure. I felt like less than a woman. It's supposed to be easy. You're supposed to be able to get pregnant and carry a baby. And I was broken. I cried so many times to my husband about my broken body and remember him holding me and telling me I wasn't broken.
I know it was hard on him too. Especially because his numbers came back so amazing. Nothing was wrong with him, nothing. And I know he wished he could take the pain away from me. I remember him telling me that he was hoping against hope that when the tests came back it was him. Something would be wrong with him. Because I'm too hard on myself and I'm too perfection driven. He knew I would tear myself apart if it was something wrong with me.
It's even harder with secondary infertility because people understand you seeking treatment even less. And it's harder to realize you need help. I didn't need help the first time. It took longer than I thought but we did it on our own. It was bizarre to me that we would need help with something we had already done. And society at large along with the infertility community both look down on you. The comments are the same - "at least you already have one" "how selfish, just love the one you have" "you don't want to lose all your money in fertility treatments when you have another one to care for."
Even after getting pregnant, it was hard to actually accept that it happened. I kept the positive pregnancy test but I only ever took one. I thought I would take a million just to keep proving to myself that I was actually pregnant, but the truth was that I was terrified that I would take a test and it would be negative and I would have to start all over again. I just worried every time a symptom diminished or disappeared. I worried about waiting until 7 weeks to search for a heartbeat. I analyzed everything my body was doing to "prove" to myself that I was pregnant. I sought out the advice of my friend who had suggested fertility treatments in the first place and her response was "I would expect no less from someone with a previous loss and infertility in her history. It's normal and I understand." She and my husband kept me sane until the ultrasound where we saw the heartbeats.
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