On Friday yet again I left work about an hour early to make the drive back for my appointment at MFM. Russell met me there, as usual. It didn't seem as busy as normal, and we didn't wait long this time to be taken back to the sonogram room. We had a different tech this time, which I was a little disappointed in- one of the things our doctor had said to us was that our sonogram techs would be able to kind of 'get to know' our baby and be able to tell if and when something seemed different or didn't seem right.
The sonogram didn't take too long, and after she checked with the doctor to make sure all of the images she had gotten were adequate she took us to the doctor's office. I was disappointed yet again- our regular doctor was out sick so we were seeing a different doctor that day. It was especially disheartening because we would be getting the results of the MRI and I really wanted to hear from our regular doctor since she has dealt with our case exclusively there.
The other doctor was very nice and answered all our questions. He told us that the MRI really didn't show us anything significant that we didn't already know. The one new piece of information that we got was that Ally does appear to have her corpus callosum, but it appears to be small. Again, they will get a better idea of this from imaging she will have done after she is born and we will have to just wait and see how it may effect her development as she grows.
From the sonogram images from that day we learned that Ally's head is, of course, still measuring large. The doctor told us there are 2 ways to measure head size- across the top from ear to ear, and then the entire circumference. From the circumference measurement, Ally's head size is in the 97th percentile- meaning her head is measuring larger than 97 percent of babies at her age. He told me that he would not be at all surprised if she was delivered by C-section (sigh).
One of the last questions we asked was when we would know about the date of the delivery. We keep being told that delivery would be scheduled for sometime between 37 and 39 weeks, which is anytime between March 21st and April 4th- a fairly significant window of time. Apparently I am getting a long term sub for my current position at work and I need to let my administrators know approximately when I will be out. I would personally like to wait to as close to 39 weeks as we can get, because that means less time at the end of the school year I will have to return for after all of my leave runs out. The doctor told me that at this point they would probably wait until closer to 39 weeks since there are no other significant issues but that would be more likely determined at my next appointment in a few weeks.
The next day Russell and I attended a prayer summit gathering our church was holding. At this gathering we both confronted some issues God brought up with us, both together and for each of us personally. Also, our church body came together to pray for us and for Ally during this time as well, which was very moving for both of us. As a result of this time, I have come up with 3 things that I am personally praying for in dealing with the path life has brought us to at this point.
1. A natural (though induced) delivery at around 39 weeks. I am not a naturalistic, at-home birth, anti-intervention type of person, it's just that natural deliveries have gone so well for me in the past and honestly the thought of a C-section is scary to me. It would also mean a longer, harder recovery and some complications with my leave and ability to work when I need to. I am still holding out hope and praying that a natural delivery is possible.
2. My job. Right now there are so many 'what ifs' about work next year I am so confused about what to do and how to feel. At the same time we have been toying with the idea of one of us staying home next year to care for Ally. I go back and forth about how I feel about all of the possibilities and am torn to pieces about making the right decision for me, for Ally, and for our family life in general.
3. I feel really silly about sharing this one, but it's the truth- a close friend. Not to say that I don't have friends, but I feel that it's been a few years since I have had a 'best friend' to share with and do things with. My closest friends from high school and college are across the country and across the globe, my Mom lives 3 hours away, and my husband is great but he's also a guy (love you Russell!). I am praying for God to send someone close in proximity and close in life to me that I can relate and share with.
Thanks so much for your continued prayers and support of us. This next week should be pretty quiet and then we have an appointment with Terry next Monday and with the neurosurgeon Tuesday to look over the results of the MRI and what it may mean for Ally's hydrocephalus and shunting possibilities (though I have a feeling they are going to say that there's nothing definite they can tell us right now...) and then we head back to MFM on the 17th.
Monday, February 24, 2014
Friday, February 14, 2014
February 14th, 2014- The MRI and the NICU
It's been a busy(ish) couple of weeks, so I'm going to include two updates for you in one (with a few fun bonuses!).
On Tuesday the 11th I went to the hospital to have the fetal MRI done. After a confusing round of finding a place to park and figuring out where to check in, I made it to the imaging unit of the hospital. After being asked a ton of questions about my health history, getting into a hospital gown, and making sure there was no extra metal in my body, I was put onto the table on my back, headphones on my ears, emergency squeeze in my hand, and some foam imaging thing over my belly, and inserted into the tube. I had asked how long the MRI usually took. They said it depended on how well the baby cooperated; the average was about 30 minutes.
It was hard to tell time in the tube, but after about 20 minutes or so the tech told me he was going to send the images they had up to the doctor to see if they had everything they needed. About 5-10 minutes later he told me they needed to do some more, so after another round he told me they were going to contact the doctor again and see if they were done. He then asked if I needed anything. I asked if it were possible I could sit up out of the tube- my lower back was really starting to bother me with all the weight of Ally and fluid and all on my back. He said that would set them back, so it would be best if I just stayed put but hopefully they were done.
I guess Ally didn't feel like having her picture taken that day, because we went for round 3. After sending those pictures to the doctor we were finally done. Again, it was hard to tell time, but I was probably in the tube about an hour, and it felt like it took another hour for me to sit up on the bed, shuffle to my shoes and get my clothes on- my back hurt so bad and I was very stiff. Even a week later when I am doing a lot of lifting (mostly Ben, especially in and out of the car) it bothers me much more easily. I was afraid I would be chair bound the rest of the day, but sitting in the car on my drive to work really helped and I was ok all day.
Friday we were supposed to have an appointment at MFM and find out the results or the MRI, but as most of you know Wednesday and Thursday we got 22 inches of snow! We were homebound from Wednesday afternoon/evening until Friday, and that was only because Russell's Dad could make it down our street in his 4 wheel drive Expedition. The MFM office was closed Friday, so the appointment has been rescheduled for this coming Friday. We will update this coming weekend with those results after the appointment.
However, since the NICU doesn't close, we were able to keep our consultation appointment on Friday. Russell's Dad drove us and came with us to the top floor of the hospital where the NICU is located. We arrived a little early (we weren't sure how all the roads would be and where we'd be able to park) so they were scrambling to get our paperwork, but it all worked out. They took us on a mini tour of the unit. There are about 5 or 6 'pods', which are large crescent shaped rooms with about 6 NICU beds in each, with a private area next to each that can be curtained off. We saw 2 of the pods, and both were pretty full. It made me sad to see the babies in their little beds, many with lots of tubes and things going in, as well as the families there with them. We didn't see any baby up close, but it just made me pray that this would be our first and last visit up to the top floor of the hospital.
Afterwards, we spoke with the doctor there that day in a conference room. He looked over our records and we filled him in on the basic details as well. We asked the questions that we had, which wasn't a whole lot. There is no guarantee that Ally will be in the NICU at all after birth; if we make it to at least 37 weeks unless we discover or she develops some other problem after birth she will stay with me and go to the regular newborn nursery. Even if the hydrocephalus turns out to be severe enough to require the shunt placement surgery, unless she has it before leaving the hospital after birth her recovery would not be in the NICU. This is another area that has a lot of unknowns, but at least we will be somewhat familiar with the NICU if we do end up there.
On Monday I had an appointment with Terry at my regular doctor. She said things were looking fine, and she told me that she has seen much worse cases of hydrocephalus, so we are trying to remain hopeful that perhaps Ally will not need the shunt...again, we will have to wait and see. (It also has me holding out hope for an induction in place of a c-section!)
Also, with our 6 day snow vacation (Wednesday to Monday) I was able to give in to my nagging nesting instinct and clean the entire house. I just did one room a day, cleaning up and cleaning out, and it is now SO much better and we are much more prepared to add one more to our cozy home! (I just have to stay out of the basement, where a lot of stuff ended up...)
Thank you for all your prayers for us...Russell got a new job (after many months of applying and interviewing)! Starting the 28th he will be working at a college in their financial aid/collections department. This means a lot more stability for our family (both financially and in scheduling), and he will be able to continue his part-time job as facilities director at a local church as well. We praise God for His provision for our family and pray as continued changes may still be coming for us in the next few months that everything would work out for us in HIS timing (and as we make our contingency plans for various situations we may find ourselves in).
On Tuesday the 11th I went to the hospital to have the fetal MRI done. After a confusing round of finding a place to park and figuring out where to check in, I made it to the imaging unit of the hospital. After being asked a ton of questions about my health history, getting into a hospital gown, and making sure there was no extra metal in my body, I was put onto the table on my back, headphones on my ears, emergency squeeze in my hand, and some foam imaging thing over my belly, and inserted into the tube. I had asked how long the MRI usually took. They said it depended on how well the baby cooperated; the average was about 30 minutes.
It was hard to tell time in the tube, but after about 20 minutes or so the tech told me he was going to send the images they had up to the doctor to see if they had everything they needed. About 5-10 minutes later he told me they needed to do some more, so after another round he told me they were going to contact the doctor again and see if they were done. He then asked if I needed anything. I asked if it were possible I could sit up out of the tube- my lower back was really starting to bother me with all the weight of Ally and fluid and all on my back. He said that would set them back, so it would be best if I just stayed put but hopefully they were done.
I guess Ally didn't feel like having her picture taken that day, because we went for round 3. After sending those pictures to the doctor we were finally done. Again, it was hard to tell time, but I was probably in the tube about an hour, and it felt like it took another hour for me to sit up on the bed, shuffle to my shoes and get my clothes on- my back hurt so bad and I was very stiff. Even a week later when I am doing a lot of lifting (mostly Ben, especially in and out of the car) it bothers me much more easily. I was afraid I would be chair bound the rest of the day, but sitting in the car on my drive to work really helped and I was ok all day.
Friday we were supposed to have an appointment at MFM and find out the results or the MRI, but as most of you know Wednesday and Thursday we got 22 inches of snow! We were homebound from Wednesday afternoon/evening until Friday, and that was only because Russell's Dad could make it down our street in his 4 wheel drive Expedition. The MFM office was closed Friday, so the appointment has been rescheduled for this coming Friday. We will update this coming weekend with those results after the appointment.
However, since the NICU doesn't close, we were able to keep our consultation appointment on Friday. Russell's Dad drove us and came with us to the top floor of the hospital where the NICU is located. We arrived a little early (we weren't sure how all the roads would be and where we'd be able to park) so they were scrambling to get our paperwork, but it all worked out. They took us on a mini tour of the unit. There are about 5 or 6 'pods', which are large crescent shaped rooms with about 6 NICU beds in each, with a private area next to each that can be curtained off. We saw 2 of the pods, and both were pretty full. It made me sad to see the babies in their little beds, many with lots of tubes and things going in, as well as the families there with them. We didn't see any baby up close, but it just made me pray that this would be our first and last visit up to the top floor of the hospital.
Afterwards, we spoke with the doctor there that day in a conference room. He looked over our records and we filled him in on the basic details as well. We asked the questions that we had, which wasn't a whole lot. There is no guarantee that Ally will be in the NICU at all after birth; if we make it to at least 37 weeks unless we discover or she develops some other problem after birth she will stay with me and go to the regular newborn nursery. Even if the hydrocephalus turns out to be severe enough to require the shunt placement surgery, unless she has it before leaving the hospital after birth her recovery would not be in the NICU. This is another area that has a lot of unknowns, but at least we will be somewhat familiar with the NICU if we do end up there.
On Monday I had an appointment with Terry at my regular doctor. She said things were looking fine, and she told me that she has seen much worse cases of hydrocephalus, so we are trying to remain hopeful that perhaps Ally will not need the shunt...again, we will have to wait and see. (It also has me holding out hope for an induction in place of a c-section!)
Also, with our 6 day snow vacation (Wednesday to Monday) I was able to give in to my nagging nesting instinct and clean the entire house. I just did one room a day, cleaning up and cleaning out, and it is now SO much better and we are much more prepared to add one more to our cozy home! (I just have to stay out of the basement, where a lot of stuff ended up...)
Thank you for all your prayers for us...Russell got a new job (after many months of applying and interviewing)! Starting the 28th he will be working at a college in their financial aid/collections department. This means a lot more stability for our family (both financially and in scheduling), and he will be able to continue his part-time job as facilities director at a local church as well. We praise God for His provision for our family and pray as continued changes may still be coming for us in the next few months that everything would work out for us in HIS timing (and as we make our contingency plans for various situations we may find ourselves in).
Wednesday, February 5, 2014
February 5th, 2014- The Neurosurgeon
On Tuesday we had the long-anticipated consultation with the neurosurgeon. Russell had requested off that day so he would be able to attend as well. We got up slightly later than usual, got everyone up and ready, and Russell drove the boys to school/daycare. I would have gone with him but since I had to go to work directly after the appointment we needed both cars, so we decided to meet there instead.
Our appointment was at 8:30, so I got there around 8:10. I got checked in and sat down to wait, and no sooner had I got out my knitting than they called me back. I texted Russell to let him know to ask for me when he got there, since he wasn't there yet.
I went into the room with the nurse. She asked me some verification questions about myself and my health history. She then asked if I had any imaging from outside the system to show the doctor. I told her no, all our imaging had been done in house, and that I was scheduled for a fetal MRI next week and all of my sonograms should hopefully be in the system with my records for them to look at.
She looked at me a bit strangely. "Are you sure you're supposed to be here? In neurosurgery?" I answered yes, that the unborn child I was carrying had Dandy-Walker and hydrocephalus and we were there for a consultation about the surgery to place a shunt.
I guess that was acceptable to her, so she finished up and as she left, said, "Good luck honey." I know she meant well, but it just really got to me. It made me really aware that this was a hard, sad situation and not normal at all. After she shut the door, I just burst into tears. As much as I'd been 'looking forward' to this appointment in hopes of getting some answers to many of the questions I had, the fact that we were here, in the neurosurgery office, made it all too real. This was really happening. Ally really had hydrocephalus and would very likely require many surgeries in her life, especially as a child, and all I wanted was it to not be real or at the very least, for me to be able to take her place.
I was able to calm down a few minutes after my breakdown, before Russell got there. And then we waited. I knitted, Russell played with his iphone, and we waited. We talked about various odds and ends, wondered what was taking so long, and waited.
Finally the doctor came in. He is a resident, which is why I couldn't find him on the website. He basically told us what little he could, which was mostly that there wasn't much he could tell us for sure. A lot would depend on Ally's condition and imaging after she was born, though some things may be clearer after the MRI next week, but even that would probably not give definite answers unless there was some blantantly obvious issue.
We asked all the questions we had about hydrocephalus, the surgery itself, and maintenance and life afterward. There wasn't a lot of new information because we had read up a lot on the topics, although he did put some of our fears at ease (the internet can give a wide variety of information, you know!). The biggest thing to me was we found out that the surgery is usually between 45 minutes and 90 minutes long, recovery time is pretty minimal (patients often leave the next day unless they have other medical complications) and resulting pain is minimal. Also, revisions of a shunt are usually due to the shunt failing and not so much the fact that they have 'outgrown' it seeing as they put in extra tubing so the shunt can grow with them (to an extent, anyway).
We had read a lot of 'scary' effects of hydrocephalus and shunting, but he put our minds a bit more at ease about it all. There are many different ways hydrocephalus can affect a person, but just as we are encountering with everything else, these effects are varying and we won't know what Ally develops as a result until it happens. However, she probably won't develop EVERY symptom, which can sometimes be hard to realize when you are trying to research and prepare yourself for what is to come.
We are going back in 4 weeks to look over the results of the MRI and see if they tell us anything else. Right now it is up in the air as to whether or not Ally will actually need a shunt; it will depend on the severity of the hydrocephalus when she is born and what her sonograms/MRI/CT scans show. If she does end up needing it, when it will be done is also up in the air; again, it depends on the severity.
I left feeling somewhat discouraged. I was hoping to get answers and have an idea of what to expect. While I definitely understand some things much better, I have finally come to the realization that we will know almost nothing for certain until Ally comes (and even the timing of that is up in the air!) and she is examined and tested further. At this point, we feel that not many decisions are going to get made until the end of March/beginning of April, and then we are going to be overloaded and overwhelmed. We are trying to come up with plans, but being the type A person that I am it is extremely frustrating and unsettling to not know what the future holds.
Most days I pass a church sign that says "Trust your unknown future to a known God." It has been on the sign for some time. Obviously God is trying to remind me that I need to put my trust in Him, and that everything will work out in His timing. I am pretty stubborn and have a hard time learning this lesson (obviously).
The next day I had an appointment with Terry at the OB's office. That went fine, there was not much to tell. We discussed the possibility of a c-section yet again but I told her that my doctor at MFM knew how much I wanted to have a regular delivery, and how the delivery would be scheduled sometime between 37 and 39 weeks. I also had them fill out my maternity leave paper work for school. I have come to the unfortunate realization that regardless of when I deliver, I will not have enough leave to last through the end of the school year, so unless I want to take time off without pay (not good), I will have to go back for at least 3 weeks until the school year ends.
After my appointment I took Ben for his checkup. That went fine, and it gave me a chance to talk with the nurse practicioner about Ally's condition (we were not able to schedule with our regular pediatrician). She also made me feel at ease, saying that they took care of several children with shunts and our pediatrician would work with us to keep an eye on her development. It made me feel better to know that Ally's pediatrician would be able to work well with us and the neurosurgery team (not that I doubted her abilities, just knowing there were other children in similar situations in the practice that they cared for made me feel a little more at ease). She also told me about some various programs that are available for young children to help them with their various developmental issues. I have already started researching this as well but it is good to know that they will be able to help and guide us along as we need it.
Thank you all for your love and support! Please continue to pray as the weeks pass by. I can tell at this point that the wait is going to be hard, since we probably won't know much (even when delivery will be!) until the delivery, and then it will all be upon us at once. It is somewhat overwhelming at times, but as I said we are trying to do our best to prepare and make plans and educate ourselves so we can make the best decisions possible when the time comes- for Ally and our family as a whole.
Our appointment was at 8:30, so I got there around 8:10. I got checked in and sat down to wait, and no sooner had I got out my knitting than they called me back. I texted Russell to let him know to ask for me when he got there, since he wasn't there yet.
I went into the room with the nurse. She asked me some verification questions about myself and my health history. She then asked if I had any imaging from outside the system to show the doctor. I told her no, all our imaging had been done in house, and that I was scheduled for a fetal MRI next week and all of my sonograms should hopefully be in the system with my records for them to look at.
She looked at me a bit strangely. "Are you sure you're supposed to be here? In neurosurgery?" I answered yes, that the unborn child I was carrying had Dandy-Walker and hydrocephalus and we were there for a consultation about the surgery to place a shunt.
I guess that was acceptable to her, so she finished up and as she left, said, "Good luck honey." I know she meant well, but it just really got to me. It made me really aware that this was a hard, sad situation and not normal at all. After she shut the door, I just burst into tears. As much as I'd been 'looking forward' to this appointment in hopes of getting some answers to many of the questions I had, the fact that we were here, in the neurosurgery office, made it all too real. This was really happening. Ally really had hydrocephalus and would very likely require many surgeries in her life, especially as a child, and all I wanted was it to not be real or at the very least, for me to be able to take her place.
I was able to calm down a few minutes after my breakdown, before Russell got there. And then we waited. I knitted, Russell played with his iphone, and we waited. We talked about various odds and ends, wondered what was taking so long, and waited.
Finally the doctor came in. He is a resident, which is why I couldn't find him on the website. He basically told us what little he could, which was mostly that there wasn't much he could tell us for sure. A lot would depend on Ally's condition and imaging after she was born, though some things may be clearer after the MRI next week, but even that would probably not give definite answers unless there was some blantantly obvious issue.
We asked all the questions we had about hydrocephalus, the surgery itself, and maintenance and life afterward. There wasn't a lot of new information because we had read up a lot on the topics, although he did put some of our fears at ease (the internet can give a wide variety of information, you know!). The biggest thing to me was we found out that the surgery is usually between 45 minutes and 90 minutes long, recovery time is pretty minimal (patients often leave the next day unless they have other medical complications) and resulting pain is minimal. Also, revisions of a shunt are usually due to the shunt failing and not so much the fact that they have 'outgrown' it seeing as they put in extra tubing so the shunt can grow with them (to an extent, anyway).
We had read a lot of 'scary' effects of hydrocephalus and shunting, but he put our minds a bit more at ease about it all. There are many different ways hydrocephalus can affect a person, but just as we are encountering with everything else, these effects are varying and we won't know what Ally develops as a result until it happens. However, she probably won't develop EVERY symptom, which can sometimes be hard to realize when you are trying to research and prepare yourself for what is to come.
We are going back in 4 weeks to look over the results of the MRI and see if they tell us anything else. Right now it is up in the air as to whether or not Ally will actually need a shunt; it will depend on the severity of the hydrocephalus when she is born and what her sonograms/MRI/CT scans show. If she does end up needing it, when it will be done is also up in the air; again, it depends on the severity.
I left feeling somewhat discouraged. I was hoping to get answers and have an idea of what to expect. While I definitely understand some things much better, I have finally come to the realization that we will know almost nothing for certain until Ally comes (and even the timing of that is up in the air!) and she is examined and tested further. At this point, we feel that not many decisions are going to get made until the end of March/beginning of April, and then we are going to be overloaded and overwhelmed. We are trying to come up with plans, but being the type A person that I am it is extremely frustrating and unsettling to not know what the future holds.
Most days I pass a church sign that says "Trust your unknown future to a known God." It has been on the sign for some time. Obviously God is trying to remind me that I need to put my trust in Him, and that everything will work out in His timing. I am pretty stubborn and have a hard time learning this lesson (obviously).
The next day I had an appointment with Terry at the OB's office. That went fine, there was not much to tell. We discussed the possibility of a c-section yet again but I told her that my doctor at MFM knew how much I wanted to have a regular delivery, and how the delivery would be scheduled sometime between 37 and 39 weeks. I also had them fill out my maternity leave paper work for school. I have come to the unfortunate realization that regardless of when I deliver, I will not have enough leave to last through the end of the school year, so unless I want to take time off without pay (not good), I will have to go back for at least 3 weeks until the school year ends.
After my appointment I took Ben for his checkup. That went fine, and it gave me a chance to talk with the nurse practicioner about Ally's condition (we were not able to schedule with our regular pediatrician). She also made me feel at ease, saying that they took care of several children with shunts and our pediatrician would work with us to keep an eye on her development. It made me feel better to know that Ally's pediatrician would be able to work well with us and the neurosurgery team (not that I doubted her abilities, just knowing there were other children in similar situations in the practice that they cared for made me feel a little more at ease). She also told me about some various programs that are available for young children to help them with their various developmental issues. I have already started researching this as well but it is good to know that they will be able to help and guide us along as we need it.
Thank you all for your love and support! Please continue to pray as the weeks pass by. I can tell at this point that the wait is going to be hard, since we probably won't know much (even when delivery will be!) until the delivery, and then it will all be upon us at once. It is somewhat overwhelming at times, but as I said we are trying to do our best to prepare and make plans and educate ourselves so we can make the best decisions possible when the time comes- for Ally and our family as a whole.
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