On Monday I called our point nurse to let her know I wanted to schedule the amniocentesis. My doctor had said that if I decided to do it that she would like to do it by 26 weeks, because after that there is a little bit more of a risk for the baby and premature labor. Since I was already on week 26 I knew it was 'now or never'. The nurse scheduled me to come in Wednesday at 4:00.
We got an unexpected day off from school that day due to the extreme cold temperatures. I was supposed to go in Thursday morning for my regular OB appointment so I called their office to see if they could squeeze me in since I was already off work and they said they could. I took Luke to school and kept Ben home with me that day.
When I dropped Luke off his teacher (who we've been keeping updated on Ally) asked if there was any new information. She said the other day at prayer request time Luke raised his hand and said "We need to pray for Ally for the needle in her head to help her head get better because it's really big and it's NOT funny."
I can't even begin to express how I felt when she told me that. I was so proud of Luke for wanting to pray about it, being (somewhat) knowledgeable about what was happening (I'm not sure where he got the idea of a needle, that's the second time I've heard him say that...maybe he thinks surgery is a needle?), and so happy that he's already become so protective of his little sister. I explained to her about the hydrocephalus and the surgery to place the shunt. I am so blessed by my Luke.
As I left Luke at school, I drank my glucose drink in the car on the way home. I was supposed to go in at 10:15, so I finished the drink at 9:17. I ran home, got some toys to entertain Ben at the office, and then drove to the doctor.
Everything at the appointment went well (including Ben's behavior!). I was not a gestational diabetic (blood sugar was 92, high is 140) and my iron levels were good too. I actually met with one of the doctors instead of Terry and we were able to discuss the diagnosis of Ally and the likely possibility of a c-section. Since nothing is for sure right now we weren't really able to discuss much else, though I did say I thought the delivery would be scheduled around 39 weeks unless something else came up. I made my next appointment for 4 weeks (February 5th) and went home.
I had a relaxing few hours at home with Ben. At 2:30 I woke him from his nap, went to pick up Luke from school, drove them to Russell's parents house, and drove to MFM, barely making it before 3:50. Russell was already there waiting for me.
A different sonogram tech took us back this time. She did a preliminary sonogram to make sure fluid levels looked good and to find out where the placenta was (so they would try to avoid having to put the needle through it) and to scope out the best place for the needle placement.
Then we waited. And waited. She came back in and said she was sorry, our doctor was backed up with patients. I knew it was because she took her time with them (as she has with us) so I didn't mind waiting...except it gave me time to think about what we were about to do and get nervous. Luckily, I had brought some knitting with me, so I had something to keep my hands and mind busy. Our sonogram tech was a knitter too, and her mom was a math teacher, so we had a lot to talk about and she kept us preoccupied. One of the lab techs (who is a former student! She was actually the one who drew my blood for the blood test in December. I'm sure she enjoyed being able to say she needled her high school geometry teacher.) came in with the supplies and went over what I should expect after the procedure, as well as what I should look out for and avoid for the next 24 hours or so.
Finally the doctor and our point nurse came in. She asked if I had any other questions, and then they laid me back to prep me. The whole procedure took about 5 minutes from start to finish. Since I was laying flat it was hard for me to see (which was good, I didn't want to see anything, my eyes were closed the whole time) but I did get a glimpse of the needle just before. I had imagined it was going to be kinda thick, but I was relieved to see that it didn't look any different from a needle to draw blood, only longer. It also didn't hurt as much as I was expecting (in my head I was giving myself a pep talk, saying you've had 2 babies with no drugs, this is going to be nothing!) and was over sooner than I expected. Afterwards they checked everything out by sonogram (which of course they also had going during the procedure to help guide them) to make sure Ally still was moving and seemed ok. Then I was taken to another room where I was hooked up to the fetal monitor for 20 minutes to make sure her heartbeat seemed normal and there was no distress. Both the doctor and nurse said that her heart rhythms looked fantastic, especially with as far along as I was and having the amniocentesis done this late. We talked with the nurse for awhile about some more questions that we had (you know how you get talking about something, and it makes you think of more questions? That's how we get every time we go to an appointment there). We scheduled my next appointment for the 22nd and they are going to work on getting us an appointment for a fetal MRI and to tour and talk with NICU staff as well as an appointment with the neurosurgeon to discuss the placement of the shunt, because right now that's where the majority of my questions stem from (that I can get solid, real answers to).
Since I had met Russell at MFM, I drove myself home and he went to pick up Ben from his parents' house. His Dad had taken Luke to Cubbies and would bring him to our house when it was over. I got home, took my shower, and warmed up some leftovers for dinner. Russell was very concerned about me for the next day because I was supposed to kinda take it easy (they said I didn't have to be on bed rest or anything, but of course with teaching you are walking around and moving a lot) and not lift anything above 25 lbs. for a day- which included Ben. I determined how to minimally lift him (out of the crib the next morning, and then in and out of the car- he could walk everywhere else) and told Russell not to worry about it (I was NOT going to take a day off just for that! I need to be careful with my time off to make sure I have enough for my maternity leave along with all the appointments I have to have now.)
I had no ill effects from the amniocentesis. I didn't have additional cramping or soreness, no bleeding or fluid leakage or anything else to be concerned about. I have to watch for signs of infection for the next week (flu-like symptoms) but otherwise it has been fine.
Now we wait for the results of the testing and the ultrasound from our next appointment in 2 weeks. They are running 3 tests: the infection study, which should come back within about a week or so and should (hopefully) have the same results as the blood test from the 12th; the chromosomal study for Downs, Trisomy 18, and Trisomy 13 which again should (hopefully) have the same results as the blood test; and the SNP Array, which will look at pieces of individual chromosomes and hopefully give us more answers about what genetics may have 'caused' the Dandy-Walker and if there are any other concerns that can't be seen by ultrasound (and rule out some possibilities as well). This test will take 2 - 3 weeks, depending on the contents of the fluid. If they have to grow Ally's cells from the fluid, it will take longer, but if cells/tissue is already in the fluid, they won't have to take the time to grow her cells and can start the analysis sooner.
This is my first post since the initial 'reveal' of Ally's condition to most of you and the 9 original blog posts. We just wanted to take the time to say thanks for all of your prayers, comments, and concerns for us. We appreciate the love you have poured out for us. We want you to know that we are doing ok by the grace of God, especially as we find out more information we are better able to prepare for life with 3, one of which may have some special needs. Everything has brought us closer in our marriage (I feel) and we are taking things one day/appointment/tidbit at a time. We would appreciate your continued prayers, and other than that the only thing that we 'need' right now is your friendship & support- for those of you who are local, we would love to see and hear from you more, especially if your children are friends with our boys. One of the great things about this situation is it has reminded us of the many friends we have, though we may not see often, from our many phases of life: high school, RC, Colonial Avenue, Spotswood, New Century, Mt. Pleasant, various workplaces (Member One, Staunton River, William Fleming, & Franklin County), and of course our family, and how thankful we are for those people and how they supported us in those seasons and now together in this one. It is like looking at a great tapestry of our lives, and we are so grateful that each of you are a part of it.
Wednesday, January 8, 2014
Monday, January 6, 2014
January 4th, 2014- The Prayer
Ah, Saturday morning. The morning where Luke always gets up first and goes and turns on PBS kids and Russell and I stay in bed until we hear Ben babbling through the monitor. This particular morning I had not slept well after our appointment the day before, turning so many things over in my mind. I had also come to the realization that we would need to start explaining some of these issues with Ally to Luke to prepare him for what was to come.
We haven't really let him in on much. Russell's parents would often keep the boys for us during appointments, so afterwards when we went to pick them up we would tell them the latest news. Luke was usually right there, but I don't think he completely understood what we were discussing, and he probably wasn't completely listening either. However, it was time to start letting him in, slowly, on what was going on with his sister so he wouldn't be scared or confused. Luke usually does really well when he knows what to expect (and Ben is too young to understand much of anything).
Russell and I talked about it while we lay there. I felt it would be best to just discuss the fact that Ally's head would be larger than normal so he would not wonder what was wrong with her head. We would need to discuss the surgery to place the shunt as best we could and explain that she would be in the hospital longer to recover and she would be in a special part of the hospital that would have special rules, especially for him being so young. I wanted to tell him about the possibility of Mommy having surgery to get the baby out and that I would be in the hospital longer than normal and be more limited when I got home at first, but then I thought it may be best to wait until we knew about that for sure and plus, the hydrocephelaus itself may be enough information for him for one day.
We called him into the bedroom and had him get on the bed with us. We explained to him that Ally's head was getting a lot of fluid inside of it and it was making it very big, so when she was born she might have a larger than usual head. We also explained to him the Ally would need surgery to help get the fluid out of her head. They would put a tube in behind her ear that would run down to her tummy and let the fluid drain and hopefully her head would get better. Ally being in the hospital may not be like it was when he came to visit Ben in the hospital either. Before he came in, got to hold Ben, and everything was good. This time, things may be very different depending on how she was doing after she was born, especially if she was in the 'special' part of the hospital.
The whole explanation took about five minutes. Luke listened carefully and made exclamations at certain times ("The tube will go down to her tummy???") And then he was fine and got up and went back to the living room.
That evening Russell was out at a work social function, so it was just me and the boys for dinner. I made myself a plate of leftovers and the boys some ravioli. As we were sitting down beginning to eat, I asked Luke if he would like to say the blessing. He said yes and began to pray.
Before I explain the prayer, I need to explain how Luke says the blessing. Usually in a blessing before you eat you thank God for the food. Luke rarely does this. He often asks to help us eat the food (which in his case often requires a lot of prayer, being as picky as he is) and he will often pray for others. Usually he prays for Ben, especially if he's been sick. His preschool teacher told us that he prays for Ben all the time at school, which I think is usually at mealtime.
So I was a little surprised when he prayed something along the lines of "God please be with Ally help her head to get better and help her when they put the needle in her head to help her head get better. Amen."
I was so touched. He said as he began to eat, "We can pray for Ally." I said "Yes, we need to pray for Ally. You can pray for her anytime."
At least I know he listens sometimes.
Luke has really been the best big brother. I was a little concerned when Ben was born that he would be jealous, but he was quite the opposite. He loves his little brother very much. I'm sure as Ben grows and gets more vocal and verbal they will have their share of fights (especially because in a few months they will begin sharing a room), but you can tell Luke really cares about Ben. He is already showing the same affection for Ally. He will come up and hug and kiss my belly and say, "I wanna give Ally a kiss. I love her." He was so hoping for a sister this time, and was really happy when we found out at the gender reveal party that she was, indeed, a girl. I know he will be so accepting of her, no matter her limitations, and will probably be very protective of her as well. I am so proud of him and the person he is becoming.
We haven't really let him in on much. Russell's parents would often keep the boys for us during appointments, so afterwards when we went to pick them up we would tell them the latest news. Luke was usually right there, but I don't think he completely understood what we were discussing, and he probably wasn't completely listening either. However, it was time to start letting him in, slowly, on what was going on with his sister so he wouldn't be scared or confused. Luke usually does really well when he knows what to expect (and Ben is too young to understand much of anything).
Russell and I talked about it while we lay there. I felt it would be best to just discuss the fact that Ally's head would be larger than normal so he would not wonder what was wrong with her head. We would need to discuss the surgery to place the shunt as best we could and explain that she would be in the hospital longer to recover and she would be in a special part of the hospital that would have special rules, especially for him being so young. I wanted to tell him about the possibility of Mommy having surgery to get the baby out and that I would be in the hospital longer than normal and be more limited when I got home at first, but then I thought it may be best to wait until we knew about that for sure and plus, the hydrocephelaus itself may be enough information for him for one day.
We called him into the bedroom and had him get on the bed with us. We explained to him that Ally's head was getting a lot of fluid inside of it and it was making it very big, so when she was born she might have a larger than usual head. We also explained to him the Ally would need surgery to help get the fluid out of her head. They would put a tube in behind her ear that would run down to her tummy and let the fluid drain and hopefully her head would get better. Ally being in the hospital may not be like it was when he came to visit Ben in the hospital either. Before he came in, got to hold Ben, and everything was good. This time, things may be very different depending on how she was doing after she was born, especially if she was in the 'special' part of the hospital.
The whole explanation took about five minutes. Luke listened carefully and made exclamations at certain times ("The tube will go down to her tummy???") And then he was fine and got up and went back to the living room.
That evening Russell was out at a work social function, so it was just me and the boys for dinner. I made myself a plate of leftovers and the boys some ravioli. As we were sitting down beginning to eat, I asked Luke if he would like to say the blessing. He said yes and began to pray.
Before I explain the prayer, I need to explain how Luke says the blessing. Usually in a blessing before you eat you thank God for the food. Luke rarely does this. He often asks to help us eat the food (which in his case often requires a lot of prayer, being as picky as he is) and he will often pray for others. Usually he prays for Ben, especially if he's been sick. His preschool teacher told us that he prays for Ben all the time at school, which I think is usually at mealtime.
So I was a little surprised when he prayed something along the lines of "God please be with Ally help her head to get better and help her when they put the needle in her head to help her head get better. Amen."
I was so touched. He said as he began to eat, "We can pray for Ally." I said "Yes, we need to pray for Ally. You can pray for her anytime."
At least I know he listens sometimes.
Luke has really been the best big brother. I was a little concerned when Ben was born that he would be jealous, but he was quite the opposite. He loves his little brother very much. I'm sure as Ben grows and gets more vocal and verbal they will have their share of fights (especially because in a few months they will begin sharing a room), but you can tell Luke really cares about Ben. He is already showing the same affection for Ally. He will come up and hug and kiss my belly and say, "I wanna give Ally a kiss. I love her." He was so hoping for a sister this time, and was really happy when we found out at the gender reveal party that she was, indeed, a girl. I know he will be so accepting of her, no matter her limitations, and will probably be very protective of her as well. I am so proud of him and the person he is becoming.
Friday, January 3, 2014
January 3rd, 2014- The Progression
The day of my second MFM appointment I again left work early to get to my 3:30 appointment. I was somewhat looking forward to this appointment, because I had a bunch of questions ready that I wanted answers to. I was quite anxious to talk to the doctor.
Russell met me a little before 3:30, and we were taken back by the sonographer a little after 3:30. I got on the table and began the routine. It was the same tech that had done our sonogram almost 3 weeks ago and had done our gender reveal sonogram too.
This sonogram did not take nearly as long as it did 3 weeks ago. After she was finished she told me to stay on the table 'gooped up' in case when the doctor came back she wanted to take more pictures. She left to get the doctor.
Russell and I were left alone in the room. We sat and chatted for a bit. After a while I was starting to wonder what was taking so long. I finally got tired of laying there 'gooped up' and used the towel to wipe off. I was in the middle of this when she finally walked in. "Don't wipe up yet!" she said.
She sat down, gooped me up again, put the machine back to my belly, and gave us the news, able to show us at the same time. The Dandy-Walker gap had gotten larger. While she did not believe that it was getting worse- it was still classified as variant- the issue was the gap was filling with fluid rapidly. So while the extra fluid would make it appear worse, she didn't really think that was the case; more so the fluid was pushing brain tissue aside. What has happened is that our Ally has developed hydrocephalus. Right now, from ear to ear across the top of her head, her head is measuring at 29 weeks- 3 weeks ahead of where she should be. This means she will definitely require a shunt shortly after birth, and her head will likely be abnormally large, at least at first. The shunt may completely bring her head to normal size/shape, or may just help it somewhat. Again, there is a lot of unknown with this, and it is something they will have to continue to watch and see.
I asked if there was any possibility that the fluid would stop building up. She said that although that was very unlikely, it may stabilize somewhat and not be as bad as it could be. I asked when the shunt would be placed, and she said that would be up to the neurosurgeon performing the surgery depending on the severity of it when born. I asked if there was a good possibility of an earlier birth being necessary because of the possibility of this being very dangerous and causing more harm without the shunt, and she said most likely not. Unless Ally shows some other issue later or turns out to have some other serious condition we don't know about yet, it would be better to have a term baby needing a shunt rather than a pre-term baby needing a shunt.
Then came the big blow, one I had been expecting since I heard the doctor say her head would be large: there was a very likely chance that this delivery would require a c-section.
I know, I know, so many women may read this and think, what's the big deal about that? I had one/two/three babies by c-section and survived, you'll be fine. I even know one mom who had 4 c-sections. Voluntarily. And wanted more kids, but her husband convinced her it was too risky for her. I think she's crazy. (No offense.)
The thing is, the one thing I had hoped for in all this craziness was that I would be able to have a natural birth like I did with my boys. One thing is for sure: I am good at getting pregnant (obviously), have had relatively easy pregnancies (even this one, with all the complications, has not been difficult physically for me at all), give birth with relative ease and no interventions (as much as you can say 'ease'- it is called labor after all and it was not the most fun time I've had in my life for sure), and make enough breastmilk to nurse and pump for a full year.
With Luke, I didn't even know I was in labor. I was having 'stomach pains' all day that Saturday (a week before my due date) but brushed it off as Braxton-Hicks because they weren't regular or particularly painful. After I threw up dinner and the pain got worse, we called the doctor, who thought I just had a stomach bug! Finally he had me come to the hospital to get checked out, and I was 7 centimeters dilated! I'll never forget the frightened glances Russell and I exchanged when the nurse told us "Looks like you're going to have a baby tonight." We got to the hospital around one in the morning. At 3:03, we had a 7 pound baby boy. I never got an epidural, and even if I had it may not have really had time to work (which is why I ultimately decided to not get it- remember the fear of needles? I had wanted to try without it anyway.)
With Ben, at dinner the night after my due date I felt some contractions, then they went away. I wondered if this would be it. With that in mind, I didn't eat much (I knew I would just throw it all up). I went to bed but woke up a few hours later with more contractions. I laid in bed for half an hour to see if they would go away; they didn't. I got up and decided to grade some tests I had brought home; after all, if I was having the baby I didn't want to leave them with the sub! They were a great distraction for me, because they took several hours to do, especially with having to get up and take breaks. Russell came out around 4 in the morning asking what I was doing- I told him I was having contractions and to go back to sleep. At 5:30 I couldn't handle it anymore. I got him up, told him to get ready, get Luke up and ready, and take him to the sitter, then come back and get me and take me to the hospital. We got to the hospital around 7:30, I was dilated 8 centimeters this time, and we had a 6 pound 10 ounce baby boy about an hour later. Again, (obviously) no epidural.
I wanted this experience again, seeing as I had to give birth. My recoveries were so much faster, there was little intervention, and it just all went so well. I just wanted SOMETHING about this pregnancy to go the way I wanted, and now it probably wouldn't. I'd probably have to have surgery, and if that was the case my hospital stay and total recovery time would be significantly longer, not to mention the fact that a needle in my spine would be a guarantee. I was ok with the fact that more people would be present due to Ally's condition (when you're in that much pain you just don't care; I wouldn't have cared if my students had been in the room and seen every gory detail) but I just wanted as little interference as possible. I didn't even like the idea of being induced, (which I was informed would probably be the alternative) but would take that over the c-section any day. I am still mourning this possibility but I know that if this is what's best, I will get through it and it will all be ok in the end; the goal is always a healthy baby and safe delivery and if this is what it takes, then so be it.
A c-section is not a guarantee, it depends on the head growth and when I deliver. If she has to come early (which obviously I don't want) then a natural delivery (though possibly induced) may be possible. Or, if her head growth stabilizes and I deliver at term (which will be 39 weeks, I don't believe they will let me get to 40 weeks at this point) it may be possible to have a natural (induced) delivery instead of a c-section. At this point, this is the option I am hoping for, because in the long run it is best for both of us. Needless to say, the doctor will be keeping a close eye on the head size at all subsequent appointments.
The other thing we learned at this appointment was that there were still questions about genetics and what is 'causing' the Dandy-Walker. Having the amniocentesis could give us some answers about them, or at least rule out some possibilities. Apparently there is a new technology called a SNP Array that looks not just at each chromosome of the baby, but individual parts of each chromosome that can tell about conditions and issues a baby may have. This would also allow a retest of the tests from the blood work at the last MFM appointment to give definite answers about genetics and infection, though the doctor did say that while the liver spots were still there, they had not changed and were probably nothing. While having the amniocentesis is still optional, it may give us some clues about what is going on and better prepare us for Ally's birth and what to expect later.
We left the appointment at 6:45, more than 3 hours after we got there. We really appreciate the time our doctor and genetic counselor takes with us, her patience (we had a TON of questions, some that we came in with and some that popped up with the new results, which is why we took so long), and her intuition, since much of the information is not set in stone but based on her experiences and her gut (which I have come to trust very much). We are waiting to hear from her office next week to make our next appointment and to schedule the amniocentesis, since we believe that more answers sooner will be better for Ally in the long run than waiting until after she is born.
Russell met me a little before 3:30, and we were taken back by the sonographer a little after 3:30. I got on the table and began the routine. It was the same tech that had done our sonogram almost 3 weeks ago and had done our gender reveal sonogram too.
This sonogram did not take nearly as long as it did 3 weeks ago. After she was finished she told me to stay on the table 'gooped up' in case when the doctor came back she wanted to take more pictures. She left to get the doctor.
Russell and I were left alone in the room. We sat and chatted for a bit. After a while I was starting to wonder what was taking so long. I finally got tired of laying there 'gooped up' and used the towel to wipe off. I was in the middle of this when she finally walked in. "Don't wipe up yet!" she said.
She sat down, gooped me up again, put the machine back to my belly, and gave us the news, able to show us at the same time. The Dandy-Walker gap had gotten larger. While she did not believe that it was getting worse- it was still classified as variant- the issue was the gap was filling with fluid rapidly. So while the extra fluid would make it appear worse, she didn't really think that was the case; more so the fluid was pushing brain tissue aside. What has happened is that our Ally has developed hydrocephalus. Right now, from ear to ear across the top of her head, her head is measuring at 29 weeks- 3 weeks ahead of where she should be. This means she will definitely require a shunt shortly after birth, and her head will likely be abnormally large, at least at first. The shunt may completely bring her head to normal size/shape, or may just help it somewhat. Again, there is a lot of unknown with this, and it is something they will have to continue to watch and see.
I asked if there was any possibility that the fluid would stop building up. She said that although that was very unlikely, it may stabilize somewhat and not be as bad as it could be. I asked when the shunt would be placed, and she said that would be up to the neurosurgeon performing the surgery depending on the severity of it when born. I asked if there was a good possibility of an earlier birth being necessary because of the possibility of this being very dangerous and causing more harm without the shunt, and she said most likely not. Unless Ally shows some other issue later or turns out to have some other serious condition we don't know about yet, it would be better to have a term baby needing a shunt rather than a pre-term baby needing a shunt.
Then came the big blow, one I had been expecting since I heard the doctor say her head would be large: there was a very likely chance that this delivery would require a c-section.
I know, I know, so many women may read this and think, what's the big deal about that? I had one/two/three babies by c-section and survived, you'll be fine. I even know one mom who had 4 c-sections. Voluntarily. And wanted more kids, but her husband convinced her it was too risky for her. I think she's crazy. (No offense.)
The thing is, the one thing I had hoped for in all this craziness was that I would be able to have a natural birth like I did with my boys. One thing is for sure: I am good at getting pregnant (obviously), have had relatively easy pregnancies (even this one, with all the complications, has not been difficult physically for me at all), give birth with relative ease and no interventions (as much as you can say 'ease'- it is called labor after all and it was not the most fun time I've had in my life for sure), and make enough breastmilk to nurse and pump for a full year.
With Luke, I didn't even know I was in labor. I was having 'stomach pains' all day that Saturday (a week before my due date) but brushed it off as Braxton-Hicks because they weren't regular or particularly painful. After I threw up dinner and the pain got worse, we called the doctor, who thought I just had a stomach bug! Finally he had me come to the hospital to get checked out, and I was 7 centimeters dilated! I'll never forget the frightened glances Russell and I exchanged when the nurse told us "Looks like you're going to have a baby tonight." We got to the hospital around one in the morning. At 3:03, we had a 7 pound baby boy. I never got an epidural, and even if I had it may not have really had time to work (which is why I ultimately decided to not get it- remember the fear of needles? I had wanted to try without it anyway.)
With Ben, at dinner the night after my due date I felt some contractions, then they went away. I wondered if this would be it. With that in mind, I didn't eat much (I knew I would just throw it all up). I went to bed but woke up a few hours later with more contractions. I laid in bed for half an hour to see if they would go away; they didn't. I got up and decided to grade some tests I had brought home; after all, if I was having the baby I didn't want to leave them with the sub! They were a great distraction for me, because they took several hours to do, especially with having to get up and take breaks. Russell came out around 4 in the morning asking what I was doing- I told him I was having contractions and to go back to sleep. At 5:30 I couldn't handle it anymore. I got him up, told him to get ready, get Luke up and ready, and take him to the sitter, then come back and get me and take me to the hospital. We got to the hospital around 7:30, I was dilated 8 centimeters this time, and we had a 6 pound 10 ounce baby boy about an hour later. Again, (obviously) no epidural.
I wanted this experience again, seeing as I had to give birth. My recoveries were so much faster, there was little intervention, and it just all went so well. I just wanted SOMETHING about this pregnancy to go the way I wanted, and now it probably wouldn't. I'd probably have to have surgery, and if that was the case my hospital stay and total recovery time would be significantly longer, not to mention the fact that a needle in my spine would be a guarantee. I was ok with the fact that more people would be present due to Ally's condition (when you're in that much pain you just don't care; I wouldn't have cared if my students had been in the room and seen every gory detail) but I just wanted as little interference as possible. I didn't even like the idea of being induced, (which I was informed would probably be the alternative) but would take that over the c-section any day. I am still mourning this possibility but I know that if this is what's best, I will get through it and it will all be ok in the end; the goal is always a healthy baby and safe delivery and if this is what it takes, then so be it.
A c-section is not a guarantee, it depends on the head growth and when I deliver. If she has to come early (which obviously I don't want) then a natural delivery (though possibly induced) may be possible. Or, if her head growth stabilizes and I deliver at term (which will be 39 weeks, I don't believe they will let me get to 40 weeks at this point) it may be possible to have a natural (induced) delivery instead of a c-section. At this point, this is the option I am hoping for, because in the long run it is best for both of us. Needless to say, the doctor will be keeping a close eye on the head size at all subsequent appointments.
The other thing we learned at this appointment was that there were still questions about genetics and what is 'causing' the Dandy-Walker. Having the amniocentesis could give us some answers about them, or at least rule out some possibilities. Apparently there is a new technology called a SNP Array that looks not just at each chromosome of the baby, but individual parts of each chromosome that can tell about conditions and issues a baby may have. This would also allow a retest of the tests from the blood work at the last MFM appointment to give definite answers about genetics and infection, though the doctor did say that while the liver spots were still there, they had not changed and were probably nothing. While having the amniocentesis is still optional, it may give us some clues about what is going on and better prepare us for Ally's birth and what to expect later.
We left the appointment at 6:45, more than 3 hours after we got there. We really appreciate the time our doctor and genetic counselor takes with us, her patience (we had a TON of questions, some that we came in with and some that popped up with the new results, which is why we took so long), and her intuition, since much of the information is not set in stone but based on her experiences and her gut (which I have come to trust very much). We are waiting to hear from her office next week to make our next appointment and to schedule the amniocentesis, since we believe that more answers sooner will be better for Ally in the long run than waiting until after she is born.
Thursday, January 2, 2014
January 2nd, 2014- The Echocardiogram
The doctor at MFM put in a recommendation for Ally to have a fetal echocardiogram. She said she didn't see anything of particular concern about the heart, but since the heart is kinda an important organ it would be best to have it examined more closely by a specialist.
I left school at 2:00 for my appointment at 3:00. After I was taken back, the sonographer had me go through the usual routine of shirt up, towel tucked, gooped, and machine on the belly. She actually went directly to the heart on the initial contact and was able to get good pictures of what she needed. She told me the doctor who would be examining me liked to be 'hands on' and take pictures himself but not to let that get me worried that there might be something wrong.
A few minutes later the doctor came in along with what I assumed was a resident. He looked at the pictures the sonographer had already taken, and sure enough put the machine to my belly for himself and moved it around. He asked me if there had been any concerns about the baby's heart. I told him no, that the baby had been diagnosed with Dandy-Walker. I then had to go through and explain to him and the resident what that was. I also told him about the liver spots that had shown up on the last sonogram at MFM and how they thought it could be infection but the studies had come back showing the probability of that was very low. The resident looked at me and said, "Wow. That's amazing that you were able to give us all that information."
I guess that's a new part of my life now. I had never heard of Dandy-Walker before December 12th myself, and now my life and the life of someone I love dearly would be profoundly impacted by it. This is what we do as parents. It's not amazing- it's what any good parent of a child with any kind of condition should be able to do. But it was the first acknowledgment of that ability that I now possessed. It was a strange, yet satisfying feeling, that I was able to adequately advocate for my child.
The doctor told me the heart looked totally normal. Again, nothing was suspected, this was merely a precautionary test, so I was not surprised (gladly). But it was again one more hurdle jumped. The big day would be tomorrow...the next appointment with MFM.
I left school at 2:00 for my appointment at 3:00. After I was taken back, the sonographer had me go through the usual routine of shirt up, towel tucked, gooped, and machine on the belly. She actually went directly to the heart on the initial contact and was able to get good pictures of what she needed. She told me the doctor who would be examining me liked to be 'hands on' and take pictures himself but not to let that get me worried that there might be something wrong.
A few minutes later the doctor came in along with what I assumed was a resident. He looked at the pictures the sonographer had already taken, and sure enough put the machine to my belly for himself and moved it around. He asked me if there had been any concerns about the baby's heart. I told him no, that the baby had been diagnosed with Dandy-Walker. I then had to go through and explain to him and the resident what that was. I also told him about the liver spots that had shown up on the last sonogram at MFM and how they thought it could be infection but the studies had come back showing the probability of that was very low. The resident looked at me and said, "Wow. That's amazing that you were able to give us all that information."
I guess that's a new part of my life now. I had never heard of Dandy-Walker before December 12th myself, and now my life and the life of someone I love dearly would be profoundly impacted by it. This is what we do as parents. It's not amazing- it's what any good parent of a child with any kind of condition should be able to do. But it was the first acknowledgment of that ability that I now possessed. It was a strange, yet satisfying feeling, that I was able to adequately advocate for my child.
The doctor told me the heart looked totally normal. Again, nothing was suspected, this was merely a precautionary test, so I was not surprised (gladly). But it was again one more hurdle jumped. The big day would be tomorrow...the next appointment with MFM.
Tuesday, December 17, 2013
December 17th, 2013- The Results
After our appointment at MFM, we were just waiting on the results of the blood work. Our doctor had told us that right now, she was most concerned about the possibility of infection and what that might do to the baby, so I checked my phone a little more often to see if they had called with any news. They had told us the infection study would come back within a few days, and the genetic study would take a little longer because of the fact that it had to be sent to a lab in New Mexico. The genetic study would look for Down Syndrome, Trisomy 18, and Trisomy 13. Since none of those conditions were mentioned I wasn't as concerned about the genetic study as I was the infection study.
I called our nurse/point contact the next Monday afternoon to ask if 'weekend days counted as days' in how long it would take to get our results, as well as just to check and see if any results had come back. She said no weekends didn't count and there were no results yet.
On December 17th I was at school in planning. It was a weird day where we only had 2 classes instead of the normal 4 because it was the last week before Christmas break and we were testing and giving exams. I had been in planning all morning and it was almost time to go to the other class of the day when my phone rang. It was the genetic counselor.
"We've gotten the results of your infection test back." I held my breath. "Ok, great." "The results show that while you have had definite exposure to two infections at some point, none of them look like they have been present during the course of the pregnancy." I was so relieved I just cried and said, "That's great news" as the bell rang. I was so happy and thinking about getting to my class that I didn't think to ask any questions, I just thanked her and got off the phone.
Another teacher in the workroom with me who knew about what we had been dealing with with this pregnancy saw my tears and asked if I was ok. I nodded and said that everything was fine, there looked like there was no infection and that was a huge relief. She hugged me and asked if I was ok to go to class. I said yes, got myself together, sent out texts to Russell and our families to let them know the wonderful news, and got to class.
Ok, we got through this hurdle. This is great news. We now just have to deal with Dandy-Walker, which since Ally was classified as variant could also be relatively mild or even a non-issue. It gave me so much hope!
About a week later, we got a call with the results of the genetic test. As expected, we also showed a low probability of the serious genetic issues of Down Syndrome, Trisomy 18, and Trisomy 13. We were also negative for cystic fibrosis and the doctor had said the baby's spine looked great, so no spina bifida either. Praise the Lord!
I called our nurse/point contact the next Monday afternoon to ask if 'weekend days counted as days' in how long it would take to get our results, as well as just to check and see if any results had come back. She said no weekends didn't count and there were no results yet.
On December 17th I was at school in planning. It was a weird day where we only had 2 classes instead of the normal 4 because it was the last week before Christmas break and we were testing and giving exams. I had been in planning all morning and it was almost time to go to the other class of the day when my phone rang. It was the genetic counselor.
"We've gotten the results of your infection test back." I held my breath. "Ok, great." "The results show that while you have had definite exposure to two infections at some point, none of them look like they have been present during the course of the pregnancy." I was so relieved I just cried and said, "That's great news" as the bell rang. I was so happy and thinking about getting to my class that I didn't think to ask any questions, I just thanked her and got off the phone.
Another teacher in the workroom with me who knew about what we had been dealing with with this pregnancy saw my tears and asked if I was ok. I nodded and said that everything was fine, there looked like there was no infection and that was a huge relief. She hugged me and asked if I was ok to go to class. I said yes, got myself together, sent out texts to Russell and our families to let them know the wonderful news, and got to class.
Ok, we got through this hurdle. This is great news. We now just have to deal with Dandy-Walker, which since Ally was classified as variant could also be relatively mild or even a non-issue. It gave me so much hope!
About a week later, we got a call with the results of the genetic test. As expected, we also showed a low probability of the serious genetic issues of Down Syndrome, Trisomy 18, and Trisomy 13. We were also negative for cystic fibrosis and the doctor had said the baby's spine looked great, so no spina bifida either. Praise the Lord!
Saturday, December 14, 2013
December 14th, 2013- The Gender Reveal
From our sonographer at MFM from our appointment, we had a sealed envelope with the gender of baby #3. We had decided to find out the gender this time, unlike with our first two pregnancies. Everything seemed so different about this pregnancy versus our other two (planned vs. unplanned, found out right away vs. found out halfway through, no issues vs. issues) why not find out this time? I think for me too, part of me wanted to know SOMETHING definite about this baby, with all of the unknowns we were faced with at this point. Plus, we needed something to celebrate!
I had heard about gender reveal cakes, where you give the envelope to the bakery, they color the inside of the cake either pink or blue, and everyone finds out together the gender of the baby. I did some research and found a local bakery that would do gender reveal cupcakes. I thought that would be fun and decided to do it.
With everything that had been going on lately, my parents decided to come visit the weekend of the 13th - 15th. Since Russell's parents live here we thought this would be the perfect time to have the gender reveal party with our immediate families.
I ordered the cupcakes and we took the envelope to them the day after the MFM appointment. We picked them up Saturday and drove over to Russell's parents home, since they were serving lunch there.
My Mom was beside herself. My parents have 4 grandsons, and I know that she would love the baby no matter what, but she really wanted a granddaughter (and this was probably her last chance!). It killed her to wait to find out the gender of our boys, so she was so excited to find out what this one was.
I was a little nervous. Part of me wanted another boy, because I know what to do with boys. I have 2 of them already, and we have all the toys, clothes, etc. However, part of me wanted a girl for my Mom's sake and also so I could have the experience of a daughter, however different that may turn out to be from 'normal'.
My Mom waited patiently through lunch and while we sat around for a few minutes until I said, "Well, should we have dessert?" We each got a cupcake. When we were all ready, we cut in. I sort of lagged behind, because I was watching Mom. She cut hers and started crying. I couldn't see inside the way it fell open from where I was sitting, so I wasn't sure if they were tears of joy... or not. I leaned over and saw the pink...we finally had a girl!
Everyone was excited and congratulating us. We were taking pictures with our phones and texting to other family that wasn't there. Luke was happy because he had wanted a sister (I guess because he already had a brother).
So Russell and I didn't need to argue needlessly over boy names again. We have had a girl name picked out all along. We were finally getting our Allyson Ruby!
I have always liked the name Allyson, and Ruby is my Dad's mother's name. She died in 1991, the day before I turned 9 years old. Russell always insisted on trying to have a family name (which all of our kids do) and I wanted their names to be connected (by more than just their last name) so they all 3 have R middle names.
Of course, afterward Mom and I went shopping, and she started buying clothes...and she has since posted on facebook the picture of the doll she bought at home (after years of nothing but Hot Wheels and Ninja Turtles). We also picked out lavender fabric for Mom to make a car seat cover...the one we have is pretty old and worn, and she needs something a little more girly anyway! Luke picked out a onesie at Target one day when shopping with Russell, which was sweet, and I went to Once Upon a Child and bought $66 worth of clothes (14 articles of clothing, some with 2 pieces) for nothing (between the $1 clearance, a $5 off coupon, and store credit- love it when I can do that!)
Sweet girl, if you are reading this later in life (and we hope you get to!), we love you so! May God bless you and use you in mighty ways- He has already used you in our lives for the better, and you're not even 'here' yet.
I had heard about gender reveal cakes, where you give the envelope to the bakery, they color the inside of the cake either pink or blue, and everyone finds out together the gender of the baby. I did some research and found a local bakery that would do gender reveal cupcakes. I thought that would be fun and decided to do it.
With everything that had been going on lately, my parents decided to come visit the weekend of the 13th - 15th. Since Russell's parents live here we thought this would be the perfect time to have the gender reveal party with our immediate families.
I ordered the cupcakes and we took the envelope to them the day after the MFM appointment. We picked them up Saturday and drove over to Russell's parents home, since they were serving lunch there.
My Mom was beside herself. My parents have 4 grandsons, and I know that she would love the baby no matter what, but she really wanted a granddaughter (and this was probably her last chance!). It killed her to wait to find out the gender of our boys, so she was so excited to find out what this one was.
I was a little nervous. Part of me wanted another boy, because I know what to do with boys. I have 2 of them already, and we have all the toys, clothes, etc. However, part of me wanted a girl for my Mom's sake and also so I could have the experience of a daughter, however different that may turn out to be from 'normal'.
My Mom waited patiently through lunch and while we sat around for a few minutes until I said, "Well, should we have dessert?" We each got a cupcake. When we were all ready, we cut in. I sort of lagged behind, because I was watching Mom. She cut hers and started crying. I couldn't see inside the way it fell open from where I was sitting, so I wasn't sure if they were tears of joy... or not. I leaned over and saw the pink...we finally had a girl!
Everyone was excited and congratulating us. We were taking pictures with our phones and texting to other family that wasn't there. Luke was happy because he had wanted a sister (I guess because he already had a brother).
So Russell and I didn't need to argue needlessly over boy names again. We have had a girl name picked out all along. We were finally getting our Allyson Ruby!
I have always liked the name Allyson, and Ruby is my Dad's mother's name. She died in 1991, the day before I turned 9 years old. Russell always insisted on trying to have a family name (which all of our kids do) and I wanted their names to be connected (by more than just their last name) so they all 3 have R middle names.
Of course, afterward Mom and I went shopping, and she started buying clothes...and she has since posted on facebook the picture of the doll she bought at home (after years of nothing but Hot Wheels and Ninja Turtles). We also picked out lavender fabric for Mom to make a car seat cover...the one we have is pretty old and worn, and she needs something a little more girly anyway! Luke picked out a onesie at Target one day when shopping with Russell, which was sweet, and I went to Once Upon a Child and bought $66 worth of clothes (14 articles of clothing, some with 2 pieces) for nothing (between the $1 clearance, a $5 off coupon, and store credit- love it when I can do that!)
Sweet girl, if you are reading this later in life (and we hope you get to!), we love you so! May God bless you and use you in mighty ways- He has already used you in our lives for the better, and you're not even 'here' yet.
Thursday, December 12, 2013
December 12th, 2013- The Diagnosis
The day finally came for my appointment at Maternal Fetal Medicine. I left school early that day to get to my appointment(s) on time. It was going to be a big day: not only did I have my appointment at MFM but I also had one at my regular OB's office to catch up on all the blood work I had missed from that first appointment you usually have at 8 weeks. Anyone who knows me knows how much I HATE needles of any kind, so this always gets me a little anxious. (The first time I was pregnant I was having morning sickness, so combine that with how much blood they took- always seems excessive to me- I threw up and got dizzy and it was awful.) That evening I was going to be teaching my first college level class, which also had me nervous. But I was most nervous about the second half of the MFM appointment: genetic counseling.
I remember when MFM called to make the appointment; they said 2:00 for the sonogram, then 3:00 for genetic counseling. I immediately texted Russell about it and asked him to call a friend who is a PA to find out more about this. Why did we need genetic counseling? Was this standard procedure? Maybe this was how they went over the results with all the patients they see. We would go in and they would say, "Oh, it was just a shadow on the sonogram. Everything's fine!" But what if it wasn't? What were we in for?
We got there and waited a few minutes past our appointment time. The sonogram tech came and got us and took us to the room. I did the usual routine: on the table, shirt up, towel tucked, gooped up. This sonogram took a LONG time. She was taking a ton of pictures of many parts of the baby I didn't know you could distinguish by sonogram: liver, stomach, kidneys. She actually left the room and came back to take more pictures 2 different times. Maybe this should have clued me in, but it didn't: I just thought she was being thorough and maybe the doctors were giving her a hard time about the views she needed, plus the baby was moving around quite a bit.
After we finally finished, we were taken to another waiting room. After a bit of waiting the genetic counselor came to get us and took us to her office.
This was the part I was so nervous about. Before she gave us any results, she wanted us to go through our family tree. She mapped it out as we described our boys, siblings, nephews, parents, aunts, uncles, and cousins, and any genetic medical conditions that we knew of them having. I was bouncing my leg and practically shaking the whole time. This couldn't be good. She also asked me if I had had a recent illness or infection of if Russell or the boys had. Other than Ben having had the croup not that long ago, and the normal runny nose everyone seemed to have this time of year, there was nothing I could come up with.
Then it came out. The news. I was still shaking. Voluntarily and involuntarily.
First: there were bright spots showing up in the stomach and liver of the baby that are usually blood. Being in the stomach was not that unusual, but showing up in the liver was. The only real explanation they had was that they baby had an infection of some kind. If this was true, it would be irreversible (it would be viral, which means antibiotics don't work) and pretty devastating to the baby's development. Depending on what the infection was, it's severity, length of time, etc., it could do all kinds of damage. Because they didn't have any more information, there were really no specifics to give at this point.
Second: The cyst on the back of the head was not a cyst at all. It was a brain development issue known as Dandy-Walker. Basically, the brain usually develops as two halves in a somewhat oval shape. For Dandy-Walker babies, the two halves in the back of the brain (the cerebellum) develop leaving a gap, which fills with fluid. This is what they were seeing in the sonogram. Dandy-Walker is associated with a wide range of issues. Some people have the condition and you would never know it at all. Others have severe physical and mental/intellectual delays or deficiencies. And then there's everything in between. Again, they couldn't give us a lot of information about what to expect, because every child with Dandy-Walker is different.
As a result of Dandy-Walker, the gap in the skull often fills with fluid to the point that it puts too much pressure on the brain- a condition known as hydrocephalus. This is treatable by surgery that implants a shunt to drain the fluid into the chest cavity.
We spent a long time, I'm not really sure how long, in the office with the genetic counselor. She told us our options about finding out more information. I could take a blood test, which would not give yes or no results for sure on anything, (it's my blood with markers from the baby, not the baby's blood) but could give us a better idea about infection and genetic issues. I could also do an amniocentesis, which would give definite yes or no answers about infection and genetic issues since it uses cells from the baby itself. These were completely optional and completely up to us.
When she left to get us information to read later about Dandy-Walker and amniocentesis, I just cried. I couldn't believe this. First a surprise pregnancy with horrible timing, and now the baby would have special needs as well? It just couldn't be possible. I told Russell, "I'm not cut out for this." He responded, "We have to be." I thought about what the gentleman had said at the Thanksgiving dinner to us about being parents. I can't even begin to describe what I was feeling, other than horrible and numb and disbelieving. This had always been my biggest fear- that I would have a child either born with issues or would develop them, whether from an accident or illness- and it was happening. It was real.
The counselor took us back to the waiting room so we could go in to meet the doctor. We waited for a while again, long enough to call Mom and cry and tell her what we had found out. I told her we would call later after visiting the doctor with more information and updates.
I was actually kind of annoyed. We waited a while to see the doctor, it was getting late, I needed to get to my class, and what more was she going to tell us anyway? More bad news? More devastating information on what we had just found out?
I am SO glad we got to see her. I was immediately really comfortable with her. She was very knowledgable, informative- and positive. She showed us pictures of OUR baby and described what was on OUR pictures- and what she had to say wasn't as bad as we had felt from the genetic counselor.
First, the infection. There MAY be an infection, but there may not be. She didn't lead us to believe that it wasn't a very real possibility, but she also lead us to believe that it was just as likely that there wasn't an infection, that these liver spots "are normal for this kid!" When I told her I felt fairly regular movements and could this tell us anything, she said, "Sick babies don't move a lot."
Second, the Dandy-Walker. She explained that there are two 'levels' of Dandy-Walker- syndrome and variant, with syndrome being more severe. She was classifying our baby as variant. She showed us how certain cross-sections of the brain showed the fluid-filled gap, others did not. Which meant that the gap did not span the brain from top to bottom from what they could see, which meant it may lead to less severe issues than it could. She said she has seen worse, and not seen a lot of issues with those particular children. The frustrating thing for her about Dandy-Walker is that the range of severity of issues is so wide, she really couldn't tell us for sure what issues our baby would have, even with testing before and after birth. It would be a wait-and-see as the baby grows and develops (or doesn't) certain skills, both physical and mental/intellectual.
She then explained our options for testing once again, and what would be happening next. I told her I definitely wanted to do the blood test just to at least get an idea of what may be going on since it was the least invasive, and then use the results of that to decide whether or not to do amniocentesis (since it does involve a bit of a risk). We went straight to the lab and drew the blood that evening (because by then it was early evening- 5:30. I had to call the college and tell them I would have to cancel my very first class because there was no way I was going to be on time and ready to go. Thankfully they were very understanding, and I'm sure the students didn't mind at ALL!). We talked with the doctor and the nurse assigned to our case (our point person) for some time about various questions we had and things that came up and left around 6:15. As we left, she told us not to Google everything, to stick with the information given to us by them and to go to the Dandy-Walker Alliance's website: www.dandy-walker.org Russell had already looked at the website between seeing the counselor and the doctor and had already felt somewhat better because the site contained a lot of positive stories about children with DW and the challenges they had overcome.
After we picked up the boys from Russell's parents and explaining everything to them (numbly) we went home and put them to bed, and I, of course, got online. I visited the Dandy-Walker Alliance page myself and found what Russell said to be true. I liked them on facebook, and a few days later I also found a group for parents of DW kids that I joined. I found a 5K held in Ashburn, VA called Carter's Run for Dandy-Walker. The last time it was held was May of 2013, and it will be held again May 17th 2014 and we plan to go to raise awareness and meet other families going through this that weren't far away. http://www.cartersrun.org/
However, the most interesting and inspiring thing I found was a video made by a mother. Her 2 year old son (at the time) had DWV and she talked through her diagnosis and everything she went through and coming to terms with the diagnosis. She said there was so much negative out there, she wanted to make the video to give parents (like us) hope that it would be ok. She ended the video with film of her son doing the things any normal 2 year old would do. It gave me hope that that could be us too, and inspired me to do this blog to hopefully give hope to others as well- though at this time we still aren't sure what will happen as the baby grows (though that's the other purpose of this blog- to keep you, our friends and family, updated). The link to the video is here:
http://www.youtube.com/watch?v=7cxtjxupdag
I remember when MFM called to make the appointment; they said 2:00 for the sonogram, then 3:00 for genetic counseling. I immediately texted Russell about it and asked him to call a friend who is a PA to find out more about this. Why did we need genetic counseling? Was this standard procedure? Maybe this was how they went over the results with all the patients they see. We would go in and they would say, "Oh, it was just a shadow on the sonogram. Everything's fine!" But what if it wasn't? What were we in for?
We got there and waited a few minutes past our appointment time. The sonogram tech came and got us and took us to the room. I did the usual routine: on the table, shirt up, towel tucked, gooped up. This sonogram took a LONG time. She was taking a ton of pictures of many parts of the baby I didn't know you could distinguish by sonogram: liver, stomach, kidneys. She actually left the room and came back to take more pictures 2 different times. Maybe this should have clued me in, but it didn't: I just thought she was being thorough and maybe the doctors were giving her a hard time about the views she needed, plus the baby was moving around quite a bit.
After we finally finished, we were taken to another waiting room. After a bit of waiting the genetic counselor came to get us and took us to her office.
This was the part I was so nervous about. Before she gave us any results, she wanted us to go through our family tree. She mapped it out as we described our boys, siblings, nephews, parents, aunts, uncles, and cousins, and any genetic medical conditions that we knew of them having. I was bouncing my leg and practically shaking the whole time. This couldn't be good. She also asked me if I had had a recent illness or infection of if Russell or the boys had. Other than Ben having had the croup not that long ago, and the normal runny nose everyone seemed to have this time of year, there was nothing I could come up with.
Then it came out. The news. I was still shaking. Voluntarily and involuntarily.
First: there were bright spots showing up in the stomach and liver of the baby that are usually blood. Being in the stomach was not that unusual, but showing up in the liver was. The only real explanation they had was that they baby had an infection of some kind. If this was true, it would be irreversible (it would be viral, which means antibiotics don't work) and pretty devastating to the baby's development. Depending on what the infection was, it's severity, length of time, etc., it could do all kinds of damage. Because they didn't have any more information, there were really no specifics to give at this point.
Second: The cyst on the back of the head was not a cyst at all. It was a brain development issue known as Dandy-Walker. Basically, the brain usually develops as two halves in a somewhat oval shape. For Dandy-Walker babies, the two halves in the back of the brain (the cerebellum) develop leaving a gap, which fills with fluid. This is what they were seeing in the sonogram. Dandy-Walker is associated with a wide range of issues. Some people have the condition and you would never know it at all. Others have severe physical and mental/intellectual delays or deficiencies. And then there's everything in between. Again, they couldn't give us a lot of information about what to expect, because every child with Dandy-Walker is different.
As a result of Dandy-Walker, the gap in the skull often fills with fluid to the point that it puts too much pressure on the brain- a condition known as hydrocephalus. This is treatable by surgery that implants a shunt to drain the fluid into the chest cavity.
We spent a long time, I'm not really sure how long, in the office with the genetic counselor. She told us our options about finding out more information. I could take a blood test, which would not give yes or no results for sure on anything, (it's my blood with markers from the baby, not the baby's blood) but could give us a better idea about infection and genetic issues. I could also do an amniocentesis, which would give definite yes or no answers about infection and genetic issues since it uses cells from the baby itself. These were completely optional and completely up to us.
When she left to get us information to read later about Dandy-Walker and amniocentesis, I just cried. I couldn't believe this. First a surprise pregnancy with horrible timing, and now the baby would have special needs as well? It just couldn't be possible. I told Russell, "I'm not cut out for this." He responded, "We have to be." I thought about what the gentleman had said at the Thanksgiving dinner to us about being parents. I can't even begin to describe what I was feeling, other than horrible and numb and disbelieving. This had always been my biggest fear- that I would have a child either born with issues or would develop them, whether from an accident or illness- and it was happening. It was real.
The counselor took us back to the waiting room so we could go in to meet the doctor. We waited for a while again, long enough to call Mom and cry and tell her what we had found out. I told her we would call later after visiting the doctor with more information and updates.
I was actually kind of annoyed. We waited a while to see the doctor, it was getting late, I needed to get to my class, and what more was she going to tell us anyway? More bad news? More devastating information on what we had just found out?
I am SO glad we got to see her. I was immediately really comfortable with her. She was very knowledgable, informative- and positive. She showed us pictures of OUR baby and described what was on OUR pictures- and what she had to say wasn't as bad as we had felt from the genetic counselor.
First, the infection. There MAY be an infection, but there may not be. She didn't lead us to believe that it wasn't a very real possibility, but she also lead us to believe that it was just as likely that there wasn't an infection, that these liver spots "are normal for this kid!" When I told her I felt fairly regular movements and could this tell us anything, she said, "Sick babies don't move a lot."
Second, the Dandy-Walker. She explained that there are two 'levels' of Dandy-Walker- syndrome and variant, with syndrome being more severe. She was classifying our baby as variant. She showed us how certain cross-sections of the brain showed the fluid-filled gap, others did not. Which meant that the gap did not span the brain from top to bottom from what they could see, which meant it may lead to less severe issues than it could. She said she has seen worse, and not seen a lot of issues with those particular children. The frustrating thing for her about Dandy-Walker is that the range of severity of issues is so wide, she really couldn't tell us for sure what issues our baby would have, even with testing before and after birth. It would be a wait-and-see as the baby grows and develops (or doesn't) certain skills, both physical and mental/intellectual.
She then explained our options for testing once again, and what would be happening next. I told her I definitely wanted to do the blood test just to at least get an idea of what may be going on since it was the least invasive, and then use the results of that to decide whether or not to do amniocentesis (since it does involve a bit of a risk). We went straight to the lab and drew the blood that evening (because by then it was early evening- 5:30. I had to call the college and tell them I would have to cancel my very first class because there was no way I was going to be on time and ready to go. Thankfully they were very understanding, and I'm sure the students didn't mind at ALL!). We talked with the doctor and the nurse assigned to our case (our point person) for some time about various questions we had and things that came up and left around 6:15. As we left, she told us not to Google everything, to stick with the information given to us by them and to go to the Dandy-Walker Alliance's website: www.dandy-walker.org Russell had already looked at the website between seeing the counselor and the doctor and had already felt somewhat better because the site contained a lot of positive stories about children with DW and the challenges they had overcome.
After we picked up the boys from Russell's parents and explaining everything to them (numbly) we went home and put them to bed, and I, of course, got online. I visited the Dandy-Walker Alliance page myself and found what Russell said to be true. I liked them on facebook, and a few days later I also found a group for parents of DW kids that I joined. I found a 5K held in Ashburn, VA called Carter's Run for Dandy-Walker. The last time it was held was May of 2013, and it will be held again May 17th 2014 and we plan to go to raise awareness and meet other families going through this that weren't far away. http://www.cartersrun.org/
However, the most interesting and inspiring thing I found was a video made by a mother. Her 2 year old son (at the time) had DWV and she talked through her diagnosis and everything she went through and coming to terms with the diagnosis. She said there was so much negative out there, she wanted to make the video to give parents (like us) hope that it would be ok. She ended the video with film of her son doing the things any normal 2 year old would do. It gave me hope that that could be us too, and inspired me to do this blog to hopefully give hope to others as well- though at this time we still aren't sure what will happen as the baby grows (though that's the other purpose of this blog- to keep you, our friends and family, updated). The link to the video is here:
http://www.youtube.com/watch?v=7cxtjxupdag
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