Well, here we are folks- in the hospital. *Just a warning...I tried not to be too graphic in my descriptions of things below but I did describe some physical events that occurred.*
Friday was a normal day at school. It was also Russell's first day at his new job, so our routine was switching again. Russell now drops the boys off at school/daycare, and I pick them up after school. So when the school day ended I picked them up, drove them home, and we met Russell there to go meet his parents for dinner.
After dinner, we were going to his parents' church and the church where Luke attends Cubbies for a family fun night they were having- inflatables, roller skating, cotton candy and snow cones. As we were leaving the restaurant, I felt a bit of a gush down below. When we got to the church I went to the bathroom to check it out. It wasn't too much fluid, but it did soak my through my underwear onto my pants, but a bit later I felt more and went back to check and it had become a bit pinker and contained a bit more mucus. I decided I needed to call and ask the doctor about it.
The doctor on call returned my call a few minutes later after calling the hospital. I told him what had happened and he said it sounded like bloody show and not to worry about it, just to take it easy the rest of the evening. I felt relieved, because I did NOT want to have a baby that night!
Luke was spending the night with Russell's parents that night so we left with Ben around 8 and got him to bed around 9. Since Luke wasn't there we decided to try him in Luke's bed since he would need to give the crib up pretty soon to Ally. He got up a few times but he was pretty tired and it wasn't long before he was asleep.
We stayed up and watched some tv for a bit, and a little after 10 I decided to get ready for bed. I had just finished up in the bathroom when I felt this strange sensation come over me. I felt lightheaded and dizzy and hot, and then I felt pain in my abdomen. I went and lay down on the bed and called for Russell. He came in and I told him what had happened. He asked what I wanted to do. I was laying there feeling some contraction-like pains (not too horrible, but it worried me) and said we needed to call the doctor again.
When he returned my call this time, I explained what I had been feeling. He said since I was at 34 weeks if I was truly in labor they would not do anything to stop it even though it was a bit early, and I could come in if I wanted to be checked or I could wait and see. My concern was about the fact that they had wanted to do a scheduled delivery and making sure all the necessary people and things were in place. He said not to worry, there were always the necessary people on call and they would be able to handle it. I knew this, but I was just so concerned about it being so early...3 weeks before they had even though about scheduling the delivery. As I was on the phone, the pains and other symptoms went away, so I told him I was feeling better and would try sleeping and see how things were in the morning.
Russell decided to go ahead and have his Dad come get Ben, just in case we would need to go to the hospital. I felt awful having to do that, especially with his first time in the 'big boy bed' and he was doing so well (he was actually sleeping parallel to the pillows- so cute!) but Russell felt it was better safe than sorry.
I actually fell asleep before Russell's dad got there to get him. I woke around 1:30 to use the bathroom, but did it in the dark (in the middle of the night I usually leave the light off because there is a nightlight in there and it's all I really need to see by). I went back to bed, but around 2 I felt another gush. I went back to the bathroom and this time turned on the light and was horrified- I was completely bloody, through the pad, everywhere.
Russell came running when I yelled, and I told him we
needed to get to the hospital. He got me new underwear, a towel, pants, socks, and shoes. I sat there and tried to clean up and put my contacts in, then finished getting dressed. I got my coat and got in the car and started it while I waited for Russell to come out from using the bathroom himself. Then we took off.
I was terrified. I thought for sure I had just lost her. Why else would there be so much blood? I also wasn't feeling any movement. We didn't talk much on the short trip to the hospital but I did tell Russell my fears and tried not to freak out and over analyze what was taking place.
Russell dropped me off at the ER and left to park while I went in. I told the front desk what had happened, filled out a short piece of paper with info, and started crying. The woman asked if I wanted to walk or be wheeled and I told her I didn't care, just get me where we needed to be.
I walked behind her crying the whole way. She took me to the staff elevator. When it opened we got in and she was trying to press the button to take us to the labor & delivery floor. It was giving her a hard time for a few seconds and all I wanted to do was scream 'Make it go! My baby is in trouble!'. I know it was only maybe 20 seconds or so but it felt like forever and I wanted to find out what was going on.
I got up to the correct floor and they took me back and put me in a gown. The nurse was really nice and was asking me what happened as she was hooking me up to the fetal monitor. I got so distracted as she was doing this it was hard to keep talking, especially as she moved it around trying to find where to position it. By then Russell had come in and we both breathed a huge sigh of relief when we heard it pick up the heartbeat. What a great sound!
My doctor then came in. I had called him on the way to the hospital to tell him briefly what had happened and that we were coming in. He looked and checked...the leakage was mostly water with some blood mixed in, and I really wasn't dilated at all. Basically my water was broken and so I would be admitted and probably have a baby fairly soon. He ordered a sonogram and they took me to a room.
Russell decided to go home once I'd settled in. I told him not to worry and I would call him if anything changed. I wasn't in any pain or feeling contractions so probably nothing was going to happen right away but I would call him if it did. The nurse caring for me that the monitors were showing that I was contracting about every 2 minutes! I wasn't feeling a thing so I could hardly believe it.
I was tired and tried to sleep, but it was difficult. Around 4
the sonogram tech came in with the machine. The fluid is definitely lower but everything else looked ok. Ally's heartbeat monitor shows she isn't in distress (except for the occasional dip, which is normal) and she's handling this well.
Around 7 I called home and told my mom what was going on. She said she would come down and could leave around 10:30. Russell came back around 8 after a fitful bit of trying to sleep at home and had called his parents to let them know (since nothing major happened during the night, we didn't want to wake anyone needlessly).
The rest of the day has been a rather boring waiting game. I wasn't allowed to eat since I was 'in labor' and no one seemed to be able to tell me much about what was next, except that
they were not going to give me anything to stop labor since I had made it to 34 weeks (and 1 day).
Russell's parents brought the boys to see me around 12, which was a great distraction for me. Luke immediately asked if Ally was here yet, which we had to tell him no, not yet. I also explained to him that since Ally was a bit early she would have to go to a special part of the hospital and he might not get to hold or even touch her right away, and he seemed to understand that. He was fascinated by my iv and the monitors on my belly and was terrified at the noise it made when I shifted in the bed- he wouldn't even hug me goodbye because of it.
Mom made it down around 1:45 and she came in and we had a chance to catch up. My doctor came in around 2:30 to tell me what was going on.
Basically, my labor had stopped. I never felt the contractions to begin with so I had no idea. Since my water had broken they felt like they wanted to give me up to 36 hours for it to start on its own, then after that they would start probably start pitocin. They actually wanted to try to keep her in for a bit if possible to help her with lung development. She will definitely be in the NICU since she is early, but the length of her stay will depend on her status at birth, plus any complications that develop as a result of the dandy-walker and hydrocephalus. The sonogram tech's measurements show her to be 4 lbs, 11 oz., which isn't a terrible weight, but of course it is an estimate.
So, right now we are playing the waiting game. We are very thankful to Russell's parents for helping with the boys and mom for being here for a little while to allow Russell to rest some to before the show starts! Hopefully the next time we update will be with pictures and some real answers to the many questions we have had for the last 13 weeks.
Thanks for the prayers from everyone. I can tell you all have been praying because this week I've had a real sense of peace that everything was going to work out for our family, I just had to trust and be patient. This obviously wasn't part of that plan but we will take things as they come. And obviously many of you have been praying for a natural delivery, because at this point that is what it looks like we will be having unless there are new developments (but obviously some of you forgot the part about 39 weeks! Just kidding.).
Off to hopefully get some rest and contractions going. Come on Ally girl, lots of people are ready to meet you...especially Mommy.
Saturday, March 1, 2014
Monday, February 24, 2014
February 21st, 2014- The Update
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.
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.
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.
Wednesday, January 29, 2014
January 29th, 2014- The Van
A fun post for you today- we are now officially a minivan family!
One of the things we realized not long after I found out that I was pregnant was that we would need to replace my car, because it would not hold 3 car seats (not comfortably, anyway) and replace it with a van.
I have owned my 2003 Toyota Matrix since August of that year. Dad came to RC at the beginning of my junior year of college when my Escort started giving me trouble. He wanted me to have a reliable vehicle, so he made the trip and we bought my red Matrix, sight unseen (in hindsight, Mom should've been the one to come- she is better with cars and a MUCH better negotiator- love you Dad!). A day or so later my roomie went with me to pick it up when it arrived at the dealership; I remember the two of us squealing as we drove it off the lot! It has been a great car, we took good care of it, and it really never gave me any major trouble. So this is a farewell to the 'car of my youth', pictured below (not the best picture since it was filthy due to all the snow and salt, so just imagine it clean and shiny).
We traded it in and got a 2006 Dodge Caravan. Obviously it is a used vehicle. We were not thrilled about buying used (we like to buy new, then keep vehicles until they die...we would never have gotten rid of the Matrix unless and until we had to) but it was really the only option. I did a lot of research and found this vehicle and thought it looked like a good choice. Wednesday I had a snow day and Russell was off of work, so we left the boys with Russell's parents to go look at it and ultimately buy it. I was nervous because the last time we went to this dealership was four years ago when we bought our CRV (which will barely fit 3 car seats, but we will somehow make it work!) and Mom came with us and really gave the salesman her best and we got a great deal. I was hoping I would be able to do it on my own (I was constantly texting her with information and asking for advice!) and I think I negotiated pretty well, for my first time.
Luke has been SO excited about the new car. I picked him up from Cubbies that night and he was thrilled to ride in the new van. Every time we have gone somewhere since then he has been very disappointed if he doesn't get to ride in the new van ("Mommy's red car is old and stinky. This car smells good and is awesome!").
The next day I had another snow day, so I drove the CRV to the dealership to get our (free!) state inspection and drop off the title of the Matrix (yes, we forgot the title when we went to buy the new car- oops). While waiting for the car, we got some more good news; the SNP Array from the amniocentesis came back completely normal! It looks like Ally has no genetic abnormalities! We are so thankful for such wonderful news. The last major test will be a fetal MRI to take a better look at Ally's brain, which will be on February 11th. After that, it should be just regular doctor visits and visits to MFM to keep an eye on the head growth as we get closer to 39 weeks.
Another thing that happened later that day is that we got a package from the Dandy-Walker Alliance. The bracelets and car magnets we ordered finally came! (Too bad the Matrix never got to carry one.) You too can sport one of these stylish bracelets or your new (to you) family van (or any vehicle in your fleet!) can sport one of these ribbon magnets by going to http://www.dandy-walker.org/magnet-request/. Donations to the alliance appreciated but not required!
Thanks for your prayers, comments, and concerns. You don't know how much they mean to us. As I am now officially 30 weeks it is getting closer and closer to Ally's arrival and (hopefully) a lot of questions answered and decisions to make about the future. We are trying to enjoy our current 'normal' for the little time we have left with it and rely on God and the support of our family and friends (ya'll!) with the uncertainty ahead.
One of the things we realized not long after I found out that I was pregnant was that we would need to replace my car, because it would not hold 3 car seats (not comfortably, anyway) and replace it with a van.
I have owned my 2003 Toyota Matrix since August of that year. Dad came to RC at the beginning of my junior year of college when my Escort started giving me trouble. He wanted me to have a reliable vehicle, so he made the trip and we bought my red Matrix, sight unseen (in hindsight, Mom should've been the one to come- she is better with cars and a MUCH better negotiator- love you Dad!). A day or so later my roomie went with me to pick it up when it arrived at the dealership; I remember the two of us squealing as we drove it off the lot! It has been a great car, we took good care of it, and it really never gave me any major trouble. So this is a farewell to the 'car of my youth', pictured below (not the best picture since it was filthy due to all the snow and salt, so just imagine it clean and shiny).
My dependable Matrix as we left her at the dealership...and yes, she's gone a bit ghetto from missing a hubcap. It went missing about a year ago and since it wasn't essential, it never got replaced!
We traded it in and got a 2006 Dodge Caravan. Obviously it is a used vehicle. We were not thrilled about buying used (we like to buy new, then keep vehicles until they die...we would never have gotten rid of the Matrix unless and until we had to) but it was really the only option. I did a lot of research and found this vehicle and thought it looked like a good choice. Wednesday I had a snow day and Russell was off of work, so we left the boys with Russell's parents to go look at it and ultimately buy it. I was nervous because the last time we went to this dealership was four years ago when we bought our CRV (which will barely fit 3 car seats, but we will somehow make it work!) and Mom came with us and really gave the salesman her best and we got a great deal. I was hoping I would be able to do it on my own (I was constantly texting her with information and asking for advice!) and I think I negotiated pretty well, for my first time.
Luke has been SO excited about the new car. I picked him up from Cubbies that night and he was thrilled to ride in the new van. Every time we have gone somewhere since then he has been very disappointed if he doesn't get to ride in the new van ("Mommy's red car is old and stinky. This car smells good and is awesome!").
The next day I had another snow day, so I drove the CRV to the dealership to get our (free!) state inspection and drop off the title of the Matrix (yes, we forgot the title when we went to buy the new car- oops). While waiting for the car, we got some more good news; the SNP Array from the amniocentesis came back completely normal! It looks like Ally has no genetic abnormalities! We are so thankful for such wonderful news. The last major test will be a fetal MRI to take a better look at Ally's brain, which will be on February 11th. After that, it should be just regular doctor visits and visits to MFM to keep an eye on the head growth as we get closer to 39 weeks.
Another thing that happened later that day is that we got a package from the Dandy-Walker Alliance. The bracelets and car magnets we ordered finally came! (Too bad the Matrix never got to carry one.) You too can sport one of these stylish bracelets or your new (to you) family van (or any vehicle in your fleet!) can sport one of these ribbon magnets by going to http://www.dandy-walker.org/magnet-request/. Donations to the alliance appreciated but not required!
Thanks for your prayers, comments, and concerns. You don't know how much they mean to us. As I am now officially 30 weeks it is getting closer and closer to Ally's arrival and (hopefully) a lot of questions answered and decisions to make about the future. We are trying to enjoy our current 'normal' for the little time we have left with it and rely on God and the support of our family and friends (ya'll!) with the uncertainty ahead.
Wednesday, January 22, 2014
January 22nd, 2014- The Unusual Uneventful
This was a very strange week. Monday was MLK day, then we were out of school Tuesday and Wednesday due to 'snow'. It worked out well for me, since I had my next appointment at MFM on Wednesday afternoon, so I didn't have to take time off work.
This appointment was unusual in that it was fairly uneventful. We were taken back by our 'usual' sonogram tech and she performed the sonogram. One thing that was interesting was she was able to get a frontal view of Ally's face. As I was watching, Russell said exactly what I had been thinking- "She looks like Ben!" Sometimes, even with everything that has been going on, the fact that in a few months we are going to have another BABY...it just doesn't seem real. Often we will be out somewhere and I'll see people with babies and think "I'm going to have one of those! A girl one!" I think that sometimes in dealing with her diagnosis and all of the resulting testing and waiting Ally has sometimes taken on the form of merely a medical condition that we will have to handle more than a real live person who is bound to bless our lives and bring joy to our family no matter what. Seeing that face, looking like our boys...just makes it a little more real. The tech printed it for us to take home.
After she finished we had a bit of waiting (as usual), during which I knitted, and then we were taken to our doctor's office along with our point nurse to discuss the findings.
Most of the news was pretty good. Ally's head is still measuring large, however it has not grown exponentially- it appears to still be only 2-3 weeks ahead of where it should be. If it continues this way, there may be a chance that she will not require a shunt. However, our doctor is not a neurologist, so that will be determined by the neurosurgeon. We have a consultation with him/her (not sure which right now) early in February so that we can ask all of the questions we have about the hydrocephalus and shunting. Also, depending on when I deliver, there is still the possibility of avoiding a c-section. The 'deadest' deadline for delivery is 39 weeks (which is what I am hoping for), but depending on what they see closer to the end (and anything the testing I am still waiting on reveals), they may decide to deliver anytime between 37 and 39 weeks (either way it will be a scheduled delivery). Again, we still have a ways to go before we will know any of this for sure, but we are still holding out hope for the best outcomes.
One new development that she noticed is that the ventricles in the back of the brain (where the gap is and the fluid is building) are starting to take on a funny shape. This may be nothing, but it could be an indicator that Ally is missing part or all of the corpus collosum, which connects the two halves of the brain. If this is the case, again it may not affect her at all, or it could affect some parts of development; just like the Dandy-Walker, we would have to wait and see what happens as a result.
We are still waiting on the results of the amniocentesis SNP Array and we are in the process of trying to schedule a fetal MRI to get a better look at Ally's brain. Our doctor doesn't think that either test will show anything significant (which would be good) but wants to be prepared should they give us any clues to Ally's condition and care she will need after her delivery.
This next week should be a fairly uneventful one- no doctor's appointments at all!- but the first week in February is jam-packed. I am looking forward to a relatively calm week in our normal routine.
Again, we thank you for your prayers. Please continue to pray for our possible home change. Also, I have been having some anxiety regarding the later part of this year when I would head back to school. Just thinking about resuming my usual teaching responsibilities (as of the beginning of the new semester my classes have been taken over by my sub, and I am helping other teachers in their classes- a great situation because it helps my work load and stress level and I don't have to worry about missing a lot of instructional time for appointments, and the students have some consistency through the end of the year) along with the thought of all my responsibilities with family and home, now larger with the addition of Ally is overwhelming me at times. However, I am trying to focus on the here and now and let God take care of my future and that of our family. He will give me the strength for each day, whatever comes- He promises that in His Word.
This appointment was unusual in that it was fairly uneventful. We were taken back by our 'usual' sonogram tech and she performed the sonogram. One thing that was interesting was she was able to get a frontal view of Ally's face. As I was watching, Russell said exactly what I had been thinking- "She looks like Ben!" Sometimes, even with everything that has been going on, the fact that in a few months we are going to have another BABY...it just doesn't seem real. Often we will be out somewhere and I'll see people with babies and think "I'm going to have one of those! A girl one!" I think that sometimes in dealing with her diagnosis and all of the resulting testing and waiting Ally has sometimes taken on the form of merely a medical condition that we will have to handle more than a real live person who is bound to bless our lives and bring joy to our family no matter what. Seeing that face, looking like our boys...just makes it a little more real. The tech printed it for us to take home.
The facial sonogram picture that we both thought looked like Ben!
Most of the news was pretty good. Ally's head is still measuring large, however it has not grown exponentially- it appears to still be only 2-3 weeks ahead of where it should be. If it continues this way, there may be a chance that she will not require a shunt. However, our doctor is not a neurologist, so that will be determined by the neurosurgeon. We have a consultation with him/her (not sure which right now) early in February so that we can ask all of the questions we have about the hydrocephalus and shunting. Also, depending on when I deliver, there is still the possibility of avoiding a c-section. The 'deadest' deadline for delivery is 39 weeks (which is what I am hoping for), but depending on what they see closer to the end (and anything the testing I am still waiting on reveals), they may decide to deliver anytime between 37 and 39 weeks (either way it will be a scheduled delivery). Again, we still have a ways to go before we will know any of this for sure, but we are still holding out hope for the best outcomes.
One new development that she noticed is that the ventricles in the back of the brain (where the gap is and the fluid is building) are starting to take on a funny shape. This may be nothing, but it could be an indicator that Ally is missing part or all of the corpus collosum, which connects the two halves of the brain. If this is the case, again it may not affect her at all, or it could affect some parts of development; just like the Dandy-Walker, we would have to wait and see what happens as a result.
We are still waiting on the results of the amniocentesis SNP Array and we are in the process of trying to schedule a fetal MRI to get a better look at Ally's brain. Our doctor doesn't think that either test will show anything significant (which would be good) but wants to be prepared should they give us any clues to Ally's condition and care she will need after her delivery.
This next week should be a fairly uneventful one- no doctor's appointments at all!- but the first week in February is jam-packed. I am looking forward to a relatively calm week in our normal routine.
Again, we thank you for your prayers. Please continue to pray for our possible home change. Also, I have been having some anxiety regarding the later part of this year when I would head back to school. Just thinking about resuming my usual teaching responsibilities (as of the beginning of the new semester my classes have been taken over by my sub, and I am helping other teachers in their classes- a great situation because it helps my work load and stress level and I don't have to worry about missing a lot of instructional time for appointments, and the students have some consistency through the end of the year) along with the thought of all my responsibilities with family and home, now larger with the addition of Ally is overwhelming me at times. However, I am trying to focus on the here and now and let God take care of my future and that of our family. He will give me the strength for each day, whatever comes- He promises that in His Word.
Friday, January 17, 2014
January 17th, 2014- The Reality Check
On Sunday I was browsing the internet and decided to check out the page for Carter's Run, the 5K that raises awareness for Dandy-Walker in Virginia (www.cartersrun.org). While there I was looking at the tab about Carter himself. He is now 6 years old and doing pretty well, but like most Dandy-Walker kids has had some issues and developmental delays. He didn't crawl until almost 20 months (the age Ben is now- hard to imagine!), and didn't walk on his own until last May. He also nursed exclusively for 14 months, because he has issues with swallowing and eating, therefore he now gets his nutrition by a feeding tube- he has feeding therapy so that he can eventually eat normally. He has low muscle tone so he gets therapy for that and in his toddler years his growth went off (as in, under) the charts (but at 3 years old with the help of the feeding tube he was back on the charts). However, he has never had hydrocephalus and attends school in a special needs classroom and sometimes in the regular classroom with the help of an aide.
As I was reading this, it made me nervous and scared. As I've said before, every child with Dandy-Walker is different and develops different issues and at their own pace. I feel like we've tried so hard to be positive about Ally's diagnosis that I am avoiding what may be the reality of the situation. Since I have only dealt with healthy, normally developing children, I feel that I am setting myself up for major disappointment and heartache when Ally doesn't follow in her brothers' footsteps- and it won't be her fault! She would be born this way and is very likely to overcome it in time, as Carter is/has done (as well as many, many others whose stories we've read about), but how will I handle and react to it when it does occur? When she can't sit up at 1 year old? When she can't walk until she's four? If she can't eat without a tube or talk to us or play with her brothers appropriately?
At the same time, I feel guilty for even thinking this way. There are so many children out there who have conditions that are much worse than Dandy-Walker variant with hydrocephalus. Chances are good that Ally can live a very normal life; many children with worse conditions never have that hope, especially if their condition is terminal. With all that I have been blessed with, focusing on what may be Ally's challenges seems so petty and selfish.
Sunday our pastor preached a sermon on dealing with depression. It was a very good and timely sermon for my life. While I am not clinically depressed, as he stated everyone deals with low times in their life where they may experience some level of depression. I have been battling this since probably around mid-September. Since mid-December it has gotten somewhat better due to some changing circumstances, but dealing with the results of Ally's presence and subsequent diagnosis has been a level all its own. I meant what I said in my last post- I really am doing ok, no need to worry about me- but it doesn't mean that sometimes it doesn't get overwhelming. One of the great things that our pastor said in his sermon was (and I believe it may have been a quote from someone else, but I'm not sure who) "we need to stop focusing on the 'what-ifs' and instead focus on 'God is'."
This is exactly what God has been telling me for the past several months, and I felt that this summed it up so perfectly. There are a lot of unknowns about Ally and life in general, but focusing and worrying about them is not useful- or faith-ful. My God is greater than all of my problems, worries, or situations, including Ally's. This is something I've had to continually remind myself of, sometimes just to get through the day or a certain situation that occurred during the day (even before I knew about this pregnancy). I believe God is refining me and making me have to purposely remember to rely on Him and not myself.
We thank you for your continued prayers for us. We have gotten results from the basic genetic study from the amniocentesis (the one we did with blood work before) and the results were the same- no Downs, Trisomy 18 or 13. I would appreciate prayers about a major life/home change that we are considering making, largely as a result of Ally's condition (though there are other factors as well), that God would show us what He would have us do and then work it out so that we can make it happen.
As I was reading this, it made me nervous and scared. As I've said before, every child with Dandy-Walker is different and develops different issues and at their own pace. I feel like we've tried so hard to be positive about Ally's diagnosis that I am avoiding what may be the reality of the situation. Since I have only dealt with healthy, normally developing children, I feel that I am setting myself up for major disappointment and heartache when Ally doesn't follow in her brothers' footsteps- and it won't be her fault! She would be born this way and is very likely to overcome it in time, as Carter is/has done (as well as many, many others whose stories we've read about), but how will I handle and react to it when it does occur? When she can't sit up at 1 year old? When she can't walk until she's four? If she can't eat without a tube or talk to us or play with her brothers appropriately?
At the same time, I feel guilty for even thinking this way. There are so many children out there who have conditions that are much worse than Dandy-Walker variant with hydrocephalus. Chances are good that Ally can live a very normal life; many children with worse conditions never have that hope, especially if their condition is terminal. With all that I have been blessed with, focusing on what may be Ally's challenges seems so petty and selfish.
Sunday our pastor preached a sermon on dealing with depression. It was a very good and timely sermon for my life. While I am not clinically depressed, as he stated everyone deals with low times in their life where they may experience some level of depression. I have been battling this since probably around mid-September. Since mid-December it has gotten somewhat better due to some changing circumstances, but dealing with the results of Ally's presence and subsequent diagnosis has been a level all its own. I meant what I said in my last post- I really am doing ok, no need to worry about me- but it doesn't mean that sometimes it doesn't get overwhelming. One of the great things that our pastor said in his sermon was (and I believe it may have been a quote from someone else, but I'm not sure who) "we need to stop focusing on the 'what-ifs' and instead focus on 'God is'."
This is exactly what God has been telling me for the past several months, and I felt that this summed it up so perfectly. There are a lot of unknowns about Ally and life in general, but focusing and worrying about them is not useful- or faith-ful. My God is greater than all of my problems, worries, or situations, including Ally's. This is something I've had to continually remind myself of, sometimes just to get through the day or a certain situation that occurred during the day (even before I knew about this pregnancy). I believe God is refining me and making me have to purposely remember to rely on Him and not myself.
I found this picture on Spirit FM'S facebook page and thought it perfectly pictured what we need to be doing!
We thank you for your continued prayers for us. We have gotten results from the basic genetic study from the amniocentesis (the one we did with blood work before) and the results were the same- no Downs, Trisomy 18 or 13. I would appreciate prayers about a major life/home change that we are considering making, largely as a result of Ally's condition (though there are other factors as well), that God would show us what He would have us do and then work it out so that we can make it happen.
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