Today, Aaron would have been ten months old. As I sit here and cry, I find myself wishing that I had the time to devote to some writing today...as my soul is overloaded with things that need to be said. Unfortunately, I can only steal a moment away to share just a few thoughts.
My four-year-old caught me sniffling at the computer this morning as I was looking at pictures of Aaron and deciding which one to share with Facebook on what should have been his 'ten-month' birthday. And, of course, she asked why I was crying. As we've done each time before, I just let her know that Mommy missed Baby Aaron but that I would be okay in a few minutes. She placed her hand lovingly aside my face and said, "And God doesn't mind if you're sad about Baby Aaron? Because He understands."
I suppose He probably does, but I find myself struggling to understand. I find myself hoping against hope that I could find the innocence and the acceptance that our children seem to share so readily just when we need it most. The faith of a child really is something to be admired.
Thursday, December 19, 2013
Monday, November 11, 2013
Changed
You hear a lot of parents in the babyloss community who talk about the friendships and family relationships that they've lost since the death of their child. Sometimes it happens because there is a big confrontation where hateful words are exchanged and irreparable damage is done. Sometimes it just happens slowly because phone calls and visits taper off and the relationship quietly fades away.
We often hear that we have "changed" or we are "different." Of course we are. It would be foolish to think that we wouldn't be. What others don't seem to realize is the depth of the ways in which we have changed and become different people.
In some ways, we learn to appreciate things more. We truly understand what a blessing it is to be given each day and strive to make those moments count. We work to cherish the relationships and the love that we are fortunate enough to have. We do all of this because we have come to realize that the life we are living today could be altered in the blink of eye.
With that knowledge also comes an intense fear. It becomes a near-constant companion and one that we may not even be aware that we carry around sometimes.
- I find it in the moments when I am watching my children sleep or in the breaths that catch the smell of their shampoo...without warning, I find myself terrified to walk out of their room or to let go of them because the fear of losing them too overwhelms me.
- It attacks me when I come across a photo of a friend's baby on Facebook. I have become so used to the idea that "babies die" that my first thought now when I see a sleeping infant is "Oh God. What happened??" Images of smiling, happy newborns actually catch me a little off-guard because that is no longer the norm for my haunted mind.
- I have to swallow the panic sometimes when my husband takes the girls for an outing while I nap because my mind starts racing with the thoughts of what my life would be without the three of them.
So, if you want to know why we are different or why we look so tired and haunted...it is because we are.
We often hear that we have "changed" or we are "different." Of course we are. It would be foolish to think that we wouldn't be. What others don't seem to realize is the depth of the ways in which we have changed and become different people.
In some ways, we learn to appreciate things more. We truly understand what a blessing it is to be given each day and strive to make those moments count. We work to cherish the relationships and the love that we are fortunate enough to have. We do all of this because we have come to realize that the life we are living today could be altered in the blink of eye.
With that knowledge also comes an intense fear. It becomes a near-constant companion and one that we may not even be aware that we carry around sometimes.
- I find it in the moments when I am watching my children sleep or in the breaths that catch the smell of their shampoo...without warning, I find myself terrified to walk out of their room or to let go of them because the fear of losing them too overwhelms me.
- It attacks me when I come across a photo of a friend's baby on Facebook. I have become so used to the idea that "babies die" that my first thought now when I see a sleeping infant is "Oh God. What happened??" Images of smiling, happy newborns actually catch me a little off-guard because that is no longer the norm for my haunted mind.
- I have to swallow the panic sometimes when my husband takes the girls for an outing while I nap because my mind starts racing with the thoughts of what my life would be without the three of them.
So, if you want to know why we are different or why we look so tired and haunted...it is because we are.
Sunday, November 3, 2013
Walk Your Own Path
For what it's worth, I actually wrote this post about a month ago when I had been reflecting on a few recent events...when I came back today, I found that it was still something heavy on my heart and I felt like it needed shared.
I know that I have examined the topic of bitterness a few times and have always been glad to find that it isn't something with which I have had a terribly difficult struggle. I am human, so therefore I certainly have those brief moments where I simply can not help but think "She got to have a perfectly healthy baby and I had to bury mine??" Thank God those are few and far between.
For the majority of the time, I am genuinely happy and excited for others when I find out that they are expecting a baby. I am thrilled when they get to experience a pregnancy journey free from the agony of losing a child. While I wish that Aaron's pregnancy and birth had been free from sorrow, I would never begrudge anyone else that experience. In fact, I pray that no one should have to find that kind of pain in their lives.
Lately I have seen so much bitterness and anger seeping from others in my life who have lost a child or lost multiple children and it has been weighing heavily on my heart. I understand that "hurting people hurt" but I do not accept that as an excuse. I firmly believe that you have two choices when faced with such a deep and crippling grief, because no matter what you do, you can not escape a change of epic proportions.
You can choose to let that grief consume you and let it proceed to fill every corner of your life. You can choose to shut down and allow yourself to cease functioning in a world outside of your own. You can choose to believe that your life completely ended in the moment when your loss occurred.
Or
You can choose to take ahold of the grief and make a decision to say that it will not define you. You can choose to stand up and find a way to fit the "new you" back into the world that will continue to exist whether you choose to accept it or not. You can acknowledge the fact that the life you used to know may have ended, but find strength in knowing that there is a new life you can create for yourself.
I believe that you will find days when it isn't possible to be in control of the grief or when it simply isn't possible to reach inside and find that kind of strength...but I also believe that if you don't wake up and try again the next day, you are condemning yourself to misery.
None of us asked for the pains we've been given. Sometimes, we simply are not in control of the things that life lays at our feet. And we may not always be in control of our reactions to what we are given. I do, however, think we absolutely have to strive every day to try to regain control.
Stop wasting precious energy resenting those around you who get to walk what appears to be a sunnier path and start figuring out how to navigate the path that has been set before you.
I know that I have examined the topic of bitterness a few times and have always been glad to find that it isn't something with which I have had a terribly difficult struggle. I am human, so therefore I certainly have those brief moments where I simply can not help but think "She got to have a perfectly healthy baby and I had to bury mine??" Thank God those are few and far between.
For the majority of the time, I am genuinely happy and excited for others when I find out that they are expecting a baby. I am thrilled when they get to experience a pregnancy journey free from the agony of losing a child. While I wish that Aaron's pregnancy and birth had been free from sorrow, I would never begrudge anyone else that experience. In fact, I pray that no one should have to find that kind of pain in their lives.
Lately I have seen so much bitterness and anger seeping from others in my life who have lost a child or lost multiple children and it has been weighing heavily on my heart. I understand that "hurting people hurt" but I do not accept that as an excuse. I firmly believe that you have two choices when faced with such a deep and crippling grief, because no matter what you do, you can not escape a change of epic proportions.
You can choose to let that grief consume you and let it proceed to fill every corner of your life. You can choose to shut down and allow yourself to cease functioning in a world outside of your own. You can choose to believe that your life completely ended in the moment when your loss occurred.
Or
You can choose to take ahold of the grief and make a decision to say that it will not define you. You can choose to stand up and find a way to fit the "new you" back into the world that will continue to exist whether you choose to accept it or not. You can acknowledge the fact that the life you used to know may have ended, but find strength in knowing that there is a new life you can create for yourself.
I believe that you will find days when it isn't possible to be in control of the grief or when it simply isn't possible to reach inside and find that kind of strength...but I also believe that if you don't wake up and try again the next day, you are condemning yourself to misery.
None of us asked for the pains we've been given. Sometimes, we simply are not in control of the things that life lays at our feet. And we may not always be in control of our reactions to what we are given. I do, however, think we absolutely have to strive every day to try to regain control.
Stop wasting precious energy resenting those around you who get to walk what appears to be a sunnier path and start figuring out how to navigate the path that has been set before you.
Wednesday, October 9, 2013
One Year
It has been one whole year since we received the initial shock of Aaron's diagnosis. It was October 9, 2012. It was supposed to be the day we found out whether we were having a girl or a boy (although as it turns out, we still got a surprise on that one at delivery). It was supposed to be the day that we got to see perfect little ultrasound pictures of our baby so we could share them with friends and family. It wasn't supposed to devastate our whole world. But it did.
A year ago, the girls were staying at our house with my parents. They knew that Mommy and Daddy were upset but we hadn't even had time yet to process the news for ourselves, so there was no way we could have possibly tried to explain anything to them. We stayed about thirty minutes away in a hotel room just trying to make sense of everything that had happened in the last twelve hours...an entire year later and there are still days where I'm not sure that we've made sense of anything.
I know that I have been guilty lately of long absences from writing anything and that isn't because I think of Aaron any less often or because I don't have things rolling around in my head that I should really be putting down. My absences are more because of this unbelievable fatigue that has settled over our house in the months since his death...although I know that it is therapeutic to sit down and put words to the thoughts, it's tough to make a choice between sneaking into bed a little earlier or stealing a few minutes at the computer - sometimes it isn't even a choice, we barely make it to bed before we both just give up for the day and collapse.
I know that as parents who work full-time jobs, it isn't such a strange thing to be so tired...and if it was just the physical exhaustion of too-little sleep, I think it would be a lot more manageable. Actually, I think I would welcome that sort of physical exhaustion. Where we stand right now is with that painful combination of mental fatigue coupled with the normal physical exhaustion.
Shortly after Aaron's diagnosis, I would spend hours looking through other blogs and often found many of those parents suffered the same sudden absences in their writing several months after the deaths of their little ones...I naively thought that maybe this was because that was the point at which things really started to turn around and the therapy of writing wasn't quite so necessary. Now, I'm beginning to wonder if it is more because they found themselves at the intersection of fatigue, grief, depression and life.
It's just another step of the journey and although it is proving to be pretty unpleasant, I find myself more and more convinced that it's a pretty normal one. We are learning to live in a reality where few people speak of our son and when we dare to do so, their discomfort is nearly palpable. We are still struggling to manage our grief and our loss in a world that feels as though we should be healing and "moving on." It probably looks a lot like our lives have "returned to normal" but the simple truth is that we still have no idea what that is supposed to mean.
Little by little, I trust that life will continue to smooth itself out and we will continue to get better at balancing everything. There are days here and there where I am hopeful and it seems like we're really succeeding at that task...I can only hope they find their way more frequently into our lives.
A year ago, the girls were staying at our house with my parents. They knew that Mommy and Daddy were upset but we hadn't even had time yet to process the news for ourselves, so there was no way we could have possibly tried to explain anything to them. We stayed about thirty minutes away in a hotel room just trying to make sense of everything that had happened in the last twelve hours...an entire year later and there are still days where I'm not sure that we've made sense of anything.
I know that I have been guilty lately of long absences from writing anything and that isn't because I think of Aaron any less often or because I don't have things rolling around in my head that I should really be putting down. My absences are more because of this unbelievable fatigue that has settled over our house in the months since his death...although I know that it is therapeutic to sit down and put words to the thoughts, it's tough to make a choice between sneaking into bed a little earlier or stealing a few minutes at the computer - sometimes it isn't even a choice, we barely make it to bed before we both just give up for the day and collapse.
I know that as parents who work full-time jobs, it isn't such a strange thing to be so tired...and if it was just the physical exhaustion of too-little sleep, I think it would be a lot more manageable. Actually, I think I would welcome that sort of physical exhaustion. Where we stand right now is with that painful combination of mental fatigue coupled with the normal physical exhaustion.
Shortly after Aaron's diagnosis, I would spend hours looking through other blogs and often found many of those parents suffered the same sudden absences in their writing several months after the deaths of their little ones...I naively thought that maybe this was because that was the point at which things really started to turn around and the therapy of writing wasn't quite so necessary. Now, I'm beginning to wonder if it is more because they found themselves at the intersection of fatigue, grief, depression and life.
It's just another step of the journey and although it is proving to be pretty unpleasant, I find myself more and more convinced that it's a pretty normal one. We are learning to live in a reality where few people speak of our son and when we dare to do so, their discomfort is nearly palpable. We are still struggling to manage our grief and our loss in a world that feels as though we should be healing and "moving on." It probably looks a lot like our lives have "returned to normal" but the simple truth is that we still have no idea what that is supposed to mean.
Little by little, I trust that life will continue to smooth itself out and we will continue to get better at balancing everything. There are days here and there where I am hopeful and it seems like we're really succeeding at that task...I can only hope they find their way more frequently into our lives.
Saturday, September 21, 2013
100 Posts...6 months...Who Am I?
I wrote this one on 9/1/13, two weeks after Aaron would have been six months old. I started sobbing about halfway through and as soon as I finished, I walked away and haven't been back in almost three weeks. Those three weeks haven't gone nearly as well as I had hoped they would, but we're working on it.
Once again, it's been longer than I would've liked since I last sat down to write.
Two weeks ago, Aaron would have been six months old. I had every intention of sitting down that day to write something...I didn't do it. We celebrated his day, of course, but no words came to me when I tried to think about what to write.
On one hand, the pain of not having a six-month old to cuddle and kiss and snuggle was even more present than usual. There were certainly moments that day where all I could think about was how I was supposed to be holding my son. There were other moments where I realized just how much I wanted his sisters to be playing with their baby brother instead of devising new ways to torment one another. Still, there were more moments where I caught myself just staring.
But more than all of that, it was on that day that it finally seemed time to start bringing myself back from wherever I have been in these last six months. I don't mean that I have stopped grieving - that will last a lifetime. I don't mean that I am "moving on" - I have the rest of my life where I will forever remember that there is a piece of me missing. And I don't mean that my pain has somehow magically lifted - there have been moments in the last two weeks where I still have found myself in tears.
What I mean is that I realized I wasn't being fair. I wasn't being fair to myself, my husband, or my son...but most of all, I haven't been fair to my daughters. They lost their little brother six months ago...everyone knows that. What I don't think I realized was that they also lost their mother...she disappeared on the day we received Aaron's diagnosis.
I have always been very honest about the fact that I knew I would walk through this journey and emerge a different person, but I don't know that I've been honest with myself or anyone else about exactly what that looked like.
The woman who has been living my life has not been the woman I ever wanted to be. She has been angry and moody and unpredictable. She has been sulking and exhausted and irritable. She has yelled at a husband who did nothing to provoke and snipped at children who did not deserve it. She has neglected her housework in a way that left only the bare necessities accomplished. She walked through each day and completed the tasks that most needed done but struggled to remember why she did them at all. This woman was a shell; she was simply holding my place while I tried to figure out who the hell I was supposed to be now.
On the day that my son would have been six months old, I woke up with more energy than I'd had in nearly a year. I washed every single dirty dish in my sink all at one time. I sorted the crumpled laundry that was spilling over the side of the hamper. I scrubbed the stove and the toilets and countertops. I gave the dog a bath and I planned activities for the girls. That week, we finally went to story time again. I planned menus and shopping lists for the month. We all spent time in the kitchen baking surprises for Daddy to come home to. We started focusing on preschool practice. We started living again.
I still miss Aaron just as much as always - I don't think that will ever change. But I did realize just how much I've been missing myself too.
Once again, it's been longer than I would've liked since I last sat down to write.
Two weeks ago, Aaron would have been six months old. I had every intention of sitting down that day to write something...I didn't do it. We celebrated his day, of course, but no words came to me when I tried to think about what to write.
On one hand, the pain of not having a six-month old to cuddle and kiss and snuggle was even more present than usual. There were certainly moments that day where all I could think about was how I was supposed to be holding my son. There were other moments where I realized just how much I wanted his sisters to be playing with their baby brother instead of devising new ways to torment one another. Still, there were more moments where I caught myself just staring.
But more than all of that, it was on that day that it finally seemed time to start bringing myself back from wherever I have been in these last six months. I don't mean that I have stopped grieving - that will last a lifetime. I don't mean that I am "moving on" - I have the rest of my life where I will forever remember that there is a piece of me missing. And I don't mean that my pain has somehow magically lifted - there have been moments in the last two weeks where I still have found myself in tears.
What I mean is that I realized I wasn't being fair. I wasn't being fair to myself, my husband, or my son...but most of all, I haven't been fair to my daughters. They lost their little brother six months ago...everyone knows that. What I don't think I realized was that they also lost their mother...she disappeared on the day we received Aaron's diagnosis.
I have always been very honest about the fact that I knew I would walk through this journey and emerge a different person, but I don't know that I've been honest with myself or anyone else about exactly what that looked like.
The woman who has been living my life has not been the woman I ever wanted to be. She has been angry and moody and unpredictable. She has been sulking and exhausted and irritable. She has yelled at a husband who did nothing to provoke and snipped at children who did not deserve it. She has neglected her housework in a way that left only the bare necessities accomplished. She walked through each day and completed the tasks that most needed done but struggled to remember why she did them at all. This woman was a shell; she was simply holding my place while I tried to figure out who the hell I was supposed to be now.
On the day that my son would have been six months old, I woke up with more energy than I'd had in nearly a year. I washed every single dirty dish in my sink all at one time. I sorted the crumpled laundry that was spilling over the side of the hamper. I scrubbed the stove and the toilets and countertops. I gave the dog a bath and I planned activities for the girls. That week, we finally went to story time again. I planned menus and shopping lists for the month. We all spent time in the kitchen baking surprises for Daddy to come home to. We started focusing on preschool practice. We started living again.
I still miss Aaron just as much as always - I don't think that will ever change. But I did realize just how much I've been missing myself too.
Thursday, August 15, 2013
Looking Back: A Reflection on Seeing the Specialist
This post was originally written on 8/3/13.
Seven days after our first ultrasound, we left the girls with a friend (the one person in real life who knew what was going on with us) and headed to the MFM specialist. I'd had plenty of time to consult Dr. Google and know more about what we were facing and came prepared to talk to the doctor.
Before we met with him, we had to talk with the nurse who, of course, needed to update my medical information from the last time. She initially appeared very confused as to why the computer was showing that I was 60 weeks pregnant - clearly I wasn't here for happy reasons last time and it isn't physically possible for me to be that pregnant. So, I would have honestly hoped that her powers of deduction might have solved that quandary. Nope - I needed to explain that Aaron was born in February and had died. Following that exchange, we then got to listen to her repeat to herself THREE times as she updated information, "Okay, four pregnancies, two living children." "Four pregnancies, two living children." "Four pregnancies, two living children." ...My husband is an exceedingly patient man, but by the time we had heard that three times - even he was shaking his head in frustration. (She was a very sweet lady, but obviously not at all thinking about the words coming out of her mouth in front of two people who recently buried a child.) Finally we finished that step and the doctor came in.
My first question was "Why do we even need to do this ultrasound - it's going to cost us a small fortune and won't it show the same thing as the last one?" His response, in a nutshell: "We are certified for just exactly this reason and I don't trust other people's pictures...so in order to give you my input, I have to see it." Okay, made sense to me. (He also added a few comical details that just reinforces what I've said all along about his bedside manner - he is simply incredible.)
For the next hour, he stayed in the room to talk with us and made us honestly feel like we were the only thing that mattered in that time frame (impressive, given that I know that they are a very busy practice). Within the first few minutes of the ultrasound, and while he was still sitting across the room from the screen, he was able to tell us that our baby looked perfectly normal. He asked the ultrasound tech what she was getting as official measurements and she wasn't even close to the upper range for acceptable limits. He took the time to explain how the nuchal translucency can be easily measured incorrectly and said that roughly 30-50% of the cases like ours are simply a result of bad positioning or honest error. He walked us through all of our available testing options and explained what he would recommend, if we chose to do any additional testing at all (at this point, our risk returns to approximately what it would be for the general population anyway).
We will see him again in September for the usual 20 week anatomy scan. Typically this is done in the OB's office and I was initially a little grumpy about having another expensive ultrasound done, but after time to let it all settle - I'm actually glad that we'll be having it done at their office. You see, I made the mistake of continuing my quest for knowledge and stumbled upon the ever-growing list of things that can become apparent on ultrasound between 12-20 weeks. This is truly one of those cases where ignorance is bliss. I was much better off when my information was "Your baby has a perfectly shaped little head and just the right amount of fluid behind his or her neck." I should have stopped there.
Seven days after our first ultrasound, we left the girls with a friend (the one person in real life who knew what was going on with us) and headed to the MFM specialist. I'd had plenty of time to consult Dr. Google and know more about what we were facing and came prepared to talk to the doctor.
Before we met with him, we had to talk with the nurse who, of course, needed to update my medical information from the last time. She initially appeared very confused as to why the computer was showing that I was 60 weeks pregnant - clearly I wasn't here for happy reasons last time and it isn't physically possible for me to be that pregnant. So, I would have honestly hoped that her powers of deduction might have solved that quandary. Nope - I needed to explain that Aaron was born in February and had died. Following that exchange, we then got to listen to her repeat to herself THREE times as she updated information, "Okay, four pregnancies, two living children." "Four pregnancies, two living children." "Four pregnancies, two living children." ...My husband is an exceedingly patient man, but by the time we had heard that three times - even he was shaking his head in frustration. (She was a very sweet lady, but obviously not at all thinking about the words coming out of her mouth in front of two people who recently buried a child.) Finally we finished that step and the doctor came in.
My first question was "Why do we even need to do this ultrasound - it's going to cost us a small fortune and won't it show the same thing as the last one?" His response, in a nutshell: "We are certified for just exactly this reason and I don't trust other people's pictures...so in order to give you my input, I have to see it." Okay, made sense to me. (He also added a few comical details that just reinforces what I've said all along about his bedside manner - he is simply incredible.)
For the next hour, he stayed in the room to talk with us and made us honestly feel like we were the only thing that mattered in that time frame (impressive, given that I know that they are a very busy practice). Within the first few minutes of the ultrasound, and while he was still sitting across the room from the screen, he was able to tell us that our baby looked perfectly normal. He asked the ultrasound tech what she was getting as official measurements and she wasn't even close to the upper range for acceptable limits. He took the time to explain how the nuchal translucency can be easily measured incorrectly and said that roughly 30-50% of the cases like ours are simply a result of bad positioning or honest error. He walked us through all of our available testing options and explained what he would recommend, if we chose to do any additional testing at all (at this point, our risk returns to approximately what it would be for the general population anyway).
We will see him again in September for the usual 20 week anatomy scan. Typically this is done in the OB's office and I was initially a little grumpy about having another expensive ultrasound done, but after time to let it all settle - I'm actually glad that we'll be having it done at their office. You see, I made the mistake of continuing my quest for knowledge and stumbled upon the ever-growing list of things that can become apparent on ultrasound between 12-20 weeks. This is truly one of those cases where ignorance is bliss. I was much better off when my information was "Your baby has a perfectly shaped little head and just the right amount of fluid behind his or her neck." I should have stopped there.
Wednesday, August 14, 2013
Looking Back: A Reflection on the First Ultrasound
This post was written on 8/3/13.
I'm going to cheat a little for this entry and do some reflection on the week following that first ultrasound. I simply could not bring myself to sit down and write during that time...no matter how much I knew I needed to, the words just would not come. And although we are now past this part of our journey, I want to put all those feelings into words before they begin to fade.
I barely slept at all the night before our first ultrasound. Even though I knew there was nothing I could do to change the outcome of whatever was going to happen, I was nervous. We had already made the decision that the girls would be staying with my parents that night instead of coming with us to the ultrasound (to be fair, we had not yet told anyone other than a few close friends about the pregnancy). I could not stomach the thought of them being in the room if we were to once again receive devastating news.
I did reasonably well on the way to the doctor's office, but as we stepped off of the elevator and prepared to walk in, I just lost it. We were a few minutes late because I stopped at the restroom in an attempt to get it together but quickly realized that with each passing moment, I could literally feel the hysteria working it's way up my throat and it wasn't going to get better with a few minutes of crying in a restroom. We went inside and I struggled through a brief check-in. Our favorite nurse came out to speak with us the waiting room (somehow, the receptionist had gotten the idea that I wanted to reschedule?) and I let her know that today was the day - I would be a mess whether we did it now, an hour from now or three weeks from now.
It was the same room where we received Aaron's diagnosis and I can not even begin to describe the intense panic of walking back into that room, sitting on the table and waiting to see the images that would appear. Even as I sit here typing, my body is nearly vibrating with the emotions that I can do nothing to quell.
She was able to point out almost immediately the baby's full, round head with two neatly defined lobes - no anencephaly. What an amazing blessing as we got to hear that tiny heartbeat for the first time and see little arms and legs flailing around. I struggled not to jerk around too much as I worked through the tears of joy.
Then, as she was finishing up the ultrasound, she asked if we had done any genetic testing after Aaron was born. We had not. She asked if we had done any yet this pregnancy. No. Then asked if we were planning to do any. No...but what do you see that is making you ask so many questions?? She informed us that she was seeing an increased nuchal translucency, one that was nearly twice what would be considered "within normal limits." (Simple explanation is this: nuchal translucency is a measurement of the fluid present behind the neck of the baby; it is an indicator of risk for several genetic conditions including Trisomies 13,18, 21 and Turner Syndrome. It warrants follow-up testing.) She went to speak with the doctor and since we had an appointment with her that day anyway, she led us to the exam room and we waited to talk with her.
The information was basically what I already knew - what was seen on the ultrasound was not a definitive diagnosis but was a risk factor for a number of things. They would be calling for a consultation within a week with the same Maternal-Fetal Medicine specialist that we saw to confirm Aaron's diagnosis. His office called a few hours later to set up an appointment in seven days for a Level 3 ultrasound and a consultation with the specialist.
For those seven days, we lived in a kind of limbo that would be hard to describe. Our options ranged anywhere from "Your child has another, totally-unrelated fatal birth defect" to "Your baby might be perfectly healthy without a thing in the world wrong" and everything in-between. With Aaron, the diagnosis was definitive from that first ultrasound...there was little room for doubt. We began grieving for him almost immediately - those were pretty clear feelings of loss. This time, we weren't really allowed to feel anything other than terrified at the prospect of burying another child.
I'm going to cheat a little for this entry and do some reflection on the week following that first ultrasound. I simply could not bring myself to sit down and write during that time...no matter how much I knew I needed to, the words just would not come. And although we are now past this part of our journey, I want to put all those feelings into words before they begin to fade.
I barely slept at all the night before our first ultrasound. Even though I knew there was nothing I could do to change the outcome of whatever was going to happen, I was nervous. We had already made the decision that the girls would be staying with my parents that night instead of coming with us to the ultrasound (to be fair, we had not yet told anyone other than a few close friends about the pregnancy). I could not stomach the thought of them being in the room if we were to once again receive devastating news.
I did reasonably well on the way to the doctor's office, but as we stepped off of the elevator and prepared to walk in, I just lost it. We were a few minutes late because I stopped at the restroom in an attempt to get it together but quickly realized that with each passing moment, I could literally feel the hysteria working it's way up my throat and it wasn't going to get better with a few minutes of crying in a restroom. We went inside and I struggled through a brief check-in. Our favorite nurse came out to speak with us the waiting room (somehow, the receptionist had gotten the idea that I wanted to reschedule?) and I let her know that today was the day - I would be a mess whether we did it now, an hour from now or three weeks from now.
It was the same room where we received Aaron's diagnosis and I can not even begin to describe the intense panic of walking back into that room, sitting on the table and waiting to see the images that would appear. Even as I sit here typing, my body is nearly vibrating with the emotions that I can do nothing to quell.
She was able to point out almost immediately the baby's full, round head with two neatly defined lobes - no anencephaly. What an amazing blessing as we got to hear that tiny heartbeat for the first time and see little arms and legs flailing around. I struggled not to jerk around too much as I worked through the tears of joy.
Then, as she was finishing up the ultrasound, she asked if we had done any genetic testing after Aaron was born. We had not. She asked if we had done any yet this pregnancy. No. Then asked if we were planning to do any. No...but what do you see that is making you ask so many questions?? She informed us that she was seeing an increased nuchal translucency, one that was nearly twice what would be considered "within normal limits." (Simple explanation is this: nuchal translucency is a measurement of the fluid present behind the neck of the baby; it is an indicator of risk for several genetic conditions including Trisomies 13,18, 21 and Turner Syndrome. It warrants follow-up testing.) She went to speak with the doctor and since we had an appointment with her that day anyway, she led us to the exam room and we waited to talk with her.
The information was basically what I already knew - what was seen on the ultrasound was not a definitive diagnosis but was a risk factor for a number of things. They would be calling for a consultation within a week with the same Maternal-Fetal Medicine specialist that we saw to confirm Aaron's diagnosis. His office called a few hours later to set up an appointment in seven days for a Level 3 ultrasound and a consultation with the specialist.
For those seven days, we lived in a kind of limbo that would be hard to describe. Our options ranged anywhere from "Your child has another, totally-unrelated fatal birth defect" to "Your baby might be perfectly healthy without a thing in the world wrong" and everything in-between. With Aaron, the diagnosis was definitive from that first ultrasound...there was little room for doubt. We began grieving for him almost immediately - those were pretty clear feelings of loss. This time, we weren't really allowed to feel anything other than terrified at the prospect of burying another child.
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