I've been bad about writing. We've had a few major events happen over the past few weeks. After I got the autopsy results, I knew that I wanted to seek a second opinion; more for my own peace of mind than anything else. When my mother had been diagnosed with cancer, she never got a second opinion. At that time, I promised myself that if something major ever happened to me medically, that I would seek a second opinion.
I made an appointment with a high risk ob. I had picked her out online, but also had heard from a friend that she was a highly respected physician at one of the best hospitals in the city. I had to argue with her office, but ultimately, they agreed to give me an appointment. My normal ob had chalked up Dashiell's death to a cord accident, and I truly believed that myself. So much so, that I almost cancelled my meeting with the new doctor.
After about 15 minutes of looking over my records and the autopsy report, she had thought of 3 possible other causes. One of which was neonatal alloimmune thrombocytopenia. She told us that it is an extremely rare condition and it was probably not the case, but she felt it was important to rule it out. It's so rare, in fact, that there is only 1 lab in the country that performs the blood test. She explained that, if this was the case, treatment is extremely complicated. Little did we know that we were already pregnant at the time of this meeting.
She kindly arranged for her office to draw my blood and my husband's blood on April 9 (2 days before I found out that I was pregnant) and sent them off to the lab. I truly thought this would not be an issue, so I just brushed it off.
On Monday, April 28, around 5:30, just as I was getting ready to leave work, I received a phone call. "Hi Allison, this is Dr. X." As soon as I heard that, I knew there was something wrong. IT turns out, I tested positive for this very rare disease. She explained that they had only ever seen one case of this at the hopsital where she works and was referring me to a perinatologist, with an extensive background in treatment and research of this. She also explained that treatment involves weekly IVIG (essentially a blood transfusion) as well as sampling the fetus' blood through the umbilical cord. Very scary stuff, but I was actually calm. I immediately called my husband, who then scared me. He is obviously very scared and worried about this. The good news is that we only have a 50% chance of the baby having this. (If you have the condition, it's either a 50% chance or a 100% chance). However, due to my history, they will likely start treatment very early. They won't be able to tell if the baby has this until they can perform an amniocentesis, around 17 weeks. That means, regardless, I'll be having 5-7 weeks of this IVIG.
There is not a whole lot of published information on this disease. I've put the link up here for the Wikipedia explanation as well as the link to the support group I've found. They have been a wealth of information and a great support. The good news is most of them have gone on to have healthy children. The road to bring them home is not an easy one, but I wasn't expecting this to be easy anyway.
I'm thrilled that I live here in NYC. I'm so close to the best care and feel very lucky about that. I have my first meeting with the perinatologist and also a pediatric hematologist / oncologist on Tuesday. I had my first prenatal appointment already with my "new" high risk ob on May 5. The baby measured at 7 weeks, 4 days with a heartbeat of 168 and I got "due date" of December 20. The baby will likely be delivered much earlier, between 32-36 weeks, depending on the platelet counts. Even if the baby does not have this, I'll likely be induced around 36 weeks.
On top of that, I'll be referred to an ob in the perinatologist's practice. A team of 3 doctors. The IVIG treatments are long, around 7 hours, so I'll be out of work 1 day a week once they begin. From what I've read, the side effects are not very much fun, but if it means that I'll be bringing a healthy, normal baby home, it's all worth it.
I'm so thankful that I found the "new" high risk ob. Otherwise, I would have gone forward thinking that I lost Dashiell to a freak accident. The new doctor who diagnosed us is actually leaving NYC in June. I'm so thankful that we found her and that she caught this. I'll definitely have more to write about in the coming weeks.
Sunday, May 18, 2008
Sunday, April 27, 2008
Too Much Information!
It has been 1 week since my last entry. The time is really dragging by. I wish I could just fast forward to late November when I'll be holding a healthy, living baby in my arms! This week was a very stressful week at work. On the bright side, I had less time than usual to worry about everything that could possibly be going wrong.
This past Monday, I had a momentary panic. I was feeling a pain in my lower right side. I had been having the same kind of pain there well before I got pregnant. Even so, I became panicked that this was an ectopic pregnancy. I called my ob and was told to come in for an ultrasound to rule an ectopic out. Lying on the table waiting for the ultrasound tech to come in brought memories of the day I lost Dashiell rushing back. My heart was racing, I was sweating, deep breathing and praying for everything to be ok. Everything was fine. There was no heartbeat, because it was too early, but the pregnancy is not ectopic. I also had another hcg draw. The doctor was very please with my hcg and progesterone.
Still, I continue to worry about what could be wrong. Could this be a molar pg? Could this baby be a downs baby? Could this be a blighted ovum? Ironically, I find solace in my dreams. Every time I dream of this baby, it's a happy, healthy child and I always wake up with the sense that everything will be ok. The problem is, I've learned too much about what can go wrong over the past 4 months. Constantly hearing different stories of loss has done a number on me. I'm really struggling with trying to be able to relax. I'm truly trying to cherish each day that I have been blessed with this baby. It's a much more positive spin, but I have to consciously remind myself of that. It was only 1 month ago when I was wondering if I'd ever get pregnant again at all!
My first prenatal appointment is on Monday, May 5. I'm hoping to see that beautiful heartbeat and that I will be able to relax a little more. I have a feeling that it will always be the next milestone before I can let go. At some point, I just have to trust and have faith that everything will be ok. It's a very hard thing for me to do, considering my whole belief system was turned upside down 4 months and 2 days ago. Nevertheless, I am going to try my best!
This past Monday, I had a momentary panic. I was feeling a pain in my lower right side. I had been having the same kind of pain there well before I got pregnant. Even so, I became panicked that this was an ectopic pregnancy. I called my ob and was told to come in for an ultrasound to rule an ectopic out. Lying on the table waiting for the ultrasound tech to come in brought memories of the day I lost Dashiell rushing back. My heart was racing, I was sweating, deep breathing and praying for everything to be ok. Everything was fine. There was no heartbeat, because it was too early, but the pregnancy is not ectopic. I also had another hcg draw. The doctor was very please with my hcg and progesterone.
Still, I continue to worry about what could be wrong. Could this be a molar pg? Could this baby be a downs baby? Could this be a blighted ovum? Ironically, I find solace in my dreams. Every time I dream of this baby, it's a happy, healthy child and I always wake up with the sense that everything will be ok. The problem is, I've learned too much about what can go wrong over the past 4 months. Constantly hearing different stories of loss has done a number on me. I'm really struggling with trying to be able to relax. I'm truly trying to cherish each day that I have been blessed with this baby. It's a much more positive spin, but I have to consciously remind myself of that. It was only 1 month ago when I was wondering if I'd ever get pregnant again at all!
My first prenatal appointment is on Monday, May 5. I'm hoping to see that beautiful heartbeat and that I will be able to relax a little more. I have a feeling that it will always be the next milestone before I can let go. At some point, I just have to trust and have faith that everything will be ok. It's a very hard thing for me to do, considering my whole belief system was turned upside down 4 months and 2 days ago. Nevertheless, I am going to try my best!
Sunday, April 20, 2008
The backstory
A little about my history: I am 36 year old resident of NYC. I have lived in Manhattan for 18 years. Growing up in a small town in Central New York, I had an ideal upbringing. My mom was a stay at home mom and my dad had a successful dental practice. We weren't rich, but we never wanted for anything, either. I am the oldest of 4 girls. When I was growing up, I always imagined having it all - a great career on the Broadway stage, a comfortable life in NYC and having a family.
I never really knew loss. I lost my grandparents, and although that was painful, it was somehow natural to me. When I was 26, my career was just starting to take off. I was having successful auditions at a high level, lost a lot of weight and had found the love of my life (who happened to be an actor). Suddenly, and surprisingly, I got a call on November 4, 1998 while doing a show in Florida. My mother had been diagnosed with stage 4 colon cancer. How could this be? She was such an amazing fighter. She never complained about the pain of chemo treatments or her cancer. My three younger sisters, my father and I cherised the next 7 months we had together. Long story short, she passed away peacefully at home 7 months and 12 days after her diagnosis. She was buried on what would have been her 57th birthday.
This was the first time my world has been turned upside down. My core beliefs were fundamentally shaken. I remember my uncle saying, "Parents are supposed to die before their children. It's the natural order of things." At the time, I thought he was full of it. Little did I know, I'd come to agree with him all too soon - a lesson learned the hard way.
Growing up, I do remember thinking how did two people so opposite fall in love and stay married for almost 29 years? My mother was a social butterfly. My dad, while a social person, was much more intersted in staying home during his down time. Being the sole provider I now understand why. I never questioned that my parents loved each other, but it did seem as though they lived two separate lives. When my mom fell ill, I saw the depth of their love for each other for the first time as an adult. Sometime after my mom passed away, I had been speaking with my dad about having children. He mentioned how it could definitely put a strain on a marriage and ended up confiding that he felt as if my mom had put her children first, but at the expense of their marriage. At that point, I changed my idea of what I wanted. My whole life, I had wanted children, but suddenly, it did not seem so important to me. My boyfriend at the time (who is now my husband) had never wanted children. We were actors. How could we possibly have it all? It's hard enough to support yourself in Manhattan as it is, after all.
In November of 2002, I married my love. After that, my priorities began to change. I decided to try a "real" job and stopped pursuing acting on the professional level. It was just too hard for both of us to never know how much money we would have, where we would be, etc. The next few years were really wonderful. Last year, I turned 35. All of the sudden, I was able to hear the ticking of my bioligical clock louder and louder. I honestly thought that I would never have children. It made me a little sad, but I was ok with it. I have a great relationship with my husband and two beautiful nieces. I thought we'd be fine being the cool aunt & uncle with no kids who enjoyed life and traveled.
On August 4, 2007, I found out that I was pregnant. It was a huge shock to us. We had not been trying, nor planning on trying to have kids. My husband did not react well at first at all. We saw a counsellor to discuss our feelings. Ultimately, we decided that people do it on far less than we have and that this must have happened for a reason. After the initial shock, we became very excited.
The pregnancy was very rough on my body. I had morning sickness (vomiting and all) every day from about 6 1/2 weeks until the day I delivered. I have sciatica as it is, but the pregnancy made it much worse - to the point where I could not walk for 5 days. I had to walk with a cane from about 20 weeks on. Despite all of that, the baby seemed to be doing well. The Tuesday before Thanksgiving, we got the results of our amnio. The baby was healthy with no genetic abnormalities and we were having a boy. We were thrilled. This was to be the first baby boy in the family. I have 3 sisters, and 2 of them were girls.
On Christmas Eve, we flew to Orlando, FL to spend time with 2 of my sisters and my niece. I wanted to be able to see Christmas through my 3 1/2 year old niece's eyes. Plus, we weren't sure what we'd be doing this year, since we'd have a new baby. I felt him move before we got on the plane. During the plane ride, I started having to run to the bathroom frequently. After arriving in Orlando, this seemed to get worse and my back started hurting - a different pain from the usual. I ignored everything and enjoyed the day with my niece. She even "read" a story to her baby cousin (my tummy) and kissed him, too. When my sister (who is a labor and delivery nurse) arrived home that night, I asked her if she thought I should call the doctor since I felt weird and I wasn't feeling him move. She thought it should be fine, since I was still relatively early (only 24 weeks & 4 days). I went to sleep that night feeling not quite right.
I woke up Christmas morning and my back felt better, but I was still having to run to the bathroom every 10 minutes or so and I still hadn't felt the baby move. We opened our presents and it was like a mini baby shower. We received so many cute outfits. Every gift I received was pregnancy or baby related. Finally around 12pm, I went to lay down to see if I could get him to move. After 1/2 hour with no success, I broke down & called my OB in New York. She thought it was probably fine, but told me to get to a hospital to be 100% sure. My sister took me to her hospital. I really thought that everything would be fine and that I was overreacting. I chatted with the triage nurse, who escorted me to a room and directed me to leave a urine sample. When I went to the bathroom to collect my urine, I was horrified to find that I was bleeding.
I panicked, ran to the nurses' station in tears and asked them to help me right away. Immediately, the nurse came in and tried to find my son's heartbeat with the doppler, but to no avail. She tols me not to panic, they were just going to do an ultrasound. As I lay there, even though I was unable to see the screen, it was written all of the doctor's and my sister's face. "He has no heartbeat. I'm sorry, he's gone."
My world stopped. I think I may have screamed and started sobbing. This was supposed to be such a happy Christmas and at 24 weeks, 5 days, my precious first child was dead. The doctor next told me I would have to deliver my baby. I was terrified. I had never been through any classes or training for this. It was all so surreal. I remember thinking as they wheeled me into labor & delivery that it was not supposed to be this way.
At 6pm, I was given a dose of misprostil to begin induction. They told me it could take up to 48 hours. Are you kdding me? Isn't this enough to go through? While lying in bed, in labor, we started to discuss autopsy and burial options. I got very sick from the induction medicine. I finally asked for an epidural around 10pm. There was no need to be in any pain at all. I was going through enough.
My precious baby boy was born at 11:44pm, weighing 1lb 4oz and measuring 12 1/4 inches long. His name was Dashiell Tate. My husband, sisters and I held him. He was perfect in every way, and looked exactly like Glenn. It was senseless. I will never understand why he was taken from us. We stayed in Florida until that Friday, 12/28.
I went back in January to collect his ashes. It was a difficult trip, to say the least. Over the past 16 weeks, grief has consumed my life. My days consist of would've beens and should've beens. People have sais some of the most insensitive things to me. I know they mean well, but "everything happens for a reason", "cheer up", and "move on" don't mean a hell of a lot to me now.
Dashiell should have been born on Friday, April 11. I was dreading the day and wondering how I would get through. The day hit me harder than I had expected. I was pretty much a mess, reliving the day I lost him in my head. Glenn and I had decided to try again, but had just started in March. Nothing will ever replace my son, but he awakened a burning desire I thought had long ago passed. I wanted to be a mother to a baby here on earth. I decided to take a pregnancy test on April 11, knowing full well that I was setting myself up for disappointment. To my surprise, all three tests that I took were positive!
Now, I'm embarking on the scariest 8 months of my life. I've found a new high risk ob, which is a comfort to me. Now, I know too much. I know how often miscarriage and stillbirth happen. I know how slim the chances are for a fragile embryo to survive. Although I am petrified, I am hopeful. I had my hcg and progesterone levels taken last week and the doctor was happy with them (hcg was 700 and progesterone was 32 at 16dpo). I need to keep this journal as a place to vent and share my fears. I hope that my experience can help other women in my situation. Thank you for reading and joining me on my journey.
I never really knew loss. I lost my grandparents, and although that was painful, it was somehow natural to me. When I was 26, my career was just starting to take off. I was having successful auditions at a high level, lost a lot of weight and had found the love of my life (who happened to be an actor). Suddenly, and surprisingly, I got a call on November 4, 1998 while doing a show in Florida. My mother had been diagnosed with stage 4 colon cancer. How could this be? She was such an amazing fighter. She never complained about the pain of chemo treatments or her cancer. My three younger sisters, my father and I cherised the next 7 months we had together. Long story short, she passed away peacefully at home 7 months and 12 days after her diagnosis. She was buried on what would have been her 57th birthday.
This was the first time my world has been turned upside down. My core beliefs were fundamentally shaken. I remember my uncle saying, "Parents are supposed to die before their children. It's the natural order of things." At the time, I thought he was full of it. Little did I know, I'd come to agree with him all too soon - a lesson learned the hard way.
Growing up, I do remember thinking how did two people so opposite fall in love and stay married for almost 29 years? My mother was a social butterfly. My dad, while a social person, was much more intersted in staying home during his down time. Being the sole provider I now understand why. I never questioned that my parents loved each other, but it did seem as though they lived two separate lives. When my mom fell ill, I saw the depth of their love for each other for the first time as an adult. Sometime after my mom passed away, I had been speaking with my dad about having children. He mentioned how it could definitely put a strain on a marriage and ended up confiding that he felt as if my mom had put her children first, but at the expense of their marriage. At that point, I changed my idea of what I wanted. My whole life, I had wanted children, but suddenly, it did not seem so important to me. My boyfriend at the time (who is now my husband) had never wanted children. We were actors. How could we possibly have it all? It's hard enough to support yourself in Manhattan as it is, after all.
In November of 2002, I married my love. After that, my priorities began to change. I decided to try a "real" job and stopped pursuing acting on the professional level. It was just too hard for both of us to never know how much money we would have, where we would be, etc. The next few years were really wonderful. Last year, I turned 35. All of the sudden, I was able to hear the ticking of my bioligical clock louder and louder. I honestly thought that I would never have children. It made me a little sad, but I was ok with it. I have a great relationship with my husband and two beautiful nieces. I thought we'd be fine being the cool aunt & uncle with no kids who enjoyed life and traveled.
On August 4, 2007, I found out that I was pregnant. It was a huge shock to us. We had not been trying, nor planning on trying to have kids. My husband did not react well at first at all. We saw a counsellor to discuss our feelings. Ultimately, we decided that people do it on far less than we have and that this must have happened for a reason. After the initial shock, we became very excited.
The pregnancy was very rough on my body. I had morning sickness (vomiting and all) every day from about 6 1/2 weeks until the day I delivered. I have sciatica as it is, but the pregnancy made it much worse - to the point where I could not walk for 5 days. I had to walk with a cane from about 20 weeks on. Despite all of that, the baby seemed to be doing well. The Tuesday before Thanksgiving, we got the results of our amnio. The baby was healthy with no genetic abnormalities and we were having a boy. We were thrilled. This was to be the first baby boy in the family. I have 3 sisters, and 2 of them were girls.
On Christmas Eve, we flew to Orlando, FL to spend time with 2 of my sisters and my niece. I wanted to be able to see Christmas through my 3 1/2 year old niece's eyes. Plus, we weren't sure what we'd be doing this year, since we'd have a new baby. I felt him move before we got on the plane. During the plane ride, I started having to run to the bathroom frequently. After arriving in Orlando, this seemed to get worse and my back started hurting - a different pain from the usual. I ignored everything and enjoyed the day with my niece. She even "read" a story to her baby cousin (my tummy) and kissed him, too. When my sister (who is a labor and delivery nurse) arrived home that night, I asked her if she thought I should call the doctor since I felt weird and I wasn't feeling him move. She thought it should be fine, since I was still relatively early (only 24 weeks & 4 days). I went to sleep that night feeling not quite right.
I woke up Christmas morning and my back felt better, but I was still having to run to the bathroom every 10 minutes or so and I still hadn't felt the baby move. We opened our presents and it was like a mini baby shower. We received so many cute outfits. Every gift I received was pregnancy or baby related. Finally around 12pm, I went to lay down to see if I could get him to move. After 1/2 hour with no success, I broke down & called my OB in New York. She thought it was probably fine, but told me to get to a hospital to be 100% sure. My sister took me to her hospital. I really thought that everything would be fine and that I was overreacting. I chatted with the triage nurse, who escorted me to a room and directed me to leave a urine sample. When I went to the bathroom to collect my urine, I was horrified to find that I was bleeding.
I panicked, ran to the nurses' station in tears and asked them to help me right away. Immediately, the nurse came in and tried to find my son's heartbeat with the doppler, but to no avail. She tols me not to panic, they were just going to do an ultrasound. As I lay there, even though I was unable to see the screen, it was written all of the doctor's and my sister's face. "He has no heartbeat. I'm sorry, he's gone."
My world stopped. I think I may have screamed and started sobbing. This was supposed to be such a happy Christmas and at 24 weeks, 5 days, my precious first child was dead. The doctor next told me I would have to deliver my baby. I was terrified. I had never been through any classes or training for this. It was all so surreal. I remember thinking as they wheeled me into labor & delivery that it was not supposed to be this way.
At 6pm, I was given a dose of misprostil to begin induction. They told me it could take up to 48 hours. Are you kdding me? Isn't this enough to go through? While lying in bed, in labor, we started to discuss autopsy and burial options. I got very sick from the induction medicine. I finally asked for an epidural around 10pm. There was no need to be in any pain at all. I was going through enough.
My precious baby boy was born at 11:44pm, weighing 1lb 4oz and measuring 12 1/4 inches long. His name was Dashiell Tate. My husband, sisters and I held him. He was perfect in every way, and looked exactly like Glenn. It was senseless. I will never understand why he was taken from us. We stayed in Florida until that Friday, 12/28.
I went back in January to collect his ashes. It was a difficult trip, to say the least. Over the past 16 weeks, grief has consumed my life. My days consist of would've beens and should've beens. People have sais some of the most insensitive things to me. I know they mean well, but "everything happens for a reason", "cheer up", and "move on" don't mean a hell of a lot to me now.
Dashiell should have been born on Friday, April 11. I was dreading the day and wondering how I would get through. The day hit me harder than I had expected. I was pretty much a mess, reliving the day I lost him in my head. Glenn and I had decided to try again, but had just started in March. Nothing will ever replace my son, but he awakened a burning desire I thought had long ago passed. I wanted to be a mother to a baby here on earth. I decided to take a pregnancy test on April 11, knowing full well that I was setting myself up for disappointment. To my surprise, all three tests that I took were positive!
Now, I'm embarking on the scariest 8 months of my life. I've found a new high risk ob, which is a comfort to me. Now, I know too much. I know how often miscarriage and stillbirth happen. I know how slim the chances are for a fragile embryo to survive. Although I am petrified, I am hopeful. I had my hcg and progesterone levels taken last week and the doctor was happy with them (hcg was 700 and progesterone was 32 at 16dpo). I need to keep this journal as a place to vent and share my fears. I hope that my experience can help other women in my situation. Thank you for reading and joining me on my journey.
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