Something has to give.
On a more positive note, I saw something really cool while out sampling the other day. Don't look if you are tenderhearted and like frogs.
Tuesday, August 24, 2010
No time
I have no time for me. No time to write, no time to read the beautiful words of all the wonderful people I've met here. No time to remember that one year ago today I had just started my new job and was still unaware that I was pregnant. No time to be so frustrated that I've been bleeding since one day after I ovulated. No time to be aggravated at myself for being frustrated; after all, there was a damn reason I had to resort to clomid. It's not going to fix itself, even if I secretly hope it will. I'm sad, and exhausted, and so antsy. I so badly need a break and I just don't see a way to get one. I find myself hoping I'll get fired so I can get unemployment and food stamps. I could spend a few weeks at home, pretending to look for work (like my husband tends to do when he is out of work). That tells me how desperate I'm getting. I love my job - it's the best one I've ever had.
Something has to give.
On a more positive note, I saw something really cool while out sampling the other day. Don't look if you are tenderhearted and like frogs.
Something has to give.
On a more positive note, I saw something really cool while out sampling the other day. Don't look if you are tenderhearted and like frogs.
Sunday, August 15, 2010
Dear body, I HATE YOU
I loath you. You suck. You really suck. If I could get to my ovaries they would be smashed up bloody grapes on the pavement. Maybe my uterus would be useful as crab bait.
This is just so fucking unfair.
I gave up; I wanted no more to do with this horrible waiting, and trying, and hoping, and not getting what I so desperately wanted. I FUCKING GAVE UP!!! Two rounds of clomid and a pathetic response. Over 40 ovulation tests in 3 months because you can't ever do something the same way twice (Oh - except today). Twenty some-odd negative pregnancy tests. Three years of trying for another baby. One dead fetus. Dozens of bloody days of excruciating pain. For nothing. For a tiny wooden urn filled with ashes.
And now, when I'm trying to move on, what do you do? On the one year anniversary of the conception of your most spectacular failure, after 48 days of really confusing signals - you give me the most positive OPK test EVER.
Some of you may be confused as to why I'm so angry. After all, a glaringly positive OPK to an infertile is pretty good, right? But, I planned from the very beginning of this mess to make sure a subsequent pregnancy didn't follow the same dates as Aiden. I realize it's superstitious and crazy, but I can't bring myself to get past the irrational fear. I don't want to relive every milestone and every date from my pregnancy with Aiden. I KNOW I would be a basket case. I also don't want a "do over" pregnancy, as if Aiden never existed and the last year didn't happen. I was freaked out on Friday because I thought I ovulated then, which wasn't the same date but really close. We had sex Thursday night and I told him that was it, I wasn't risking getting pregnant this cycle. That's with the laughable assumption that it would be that easy.
I'm angry because in the 7 years I've been using OPK's, I've never had a test where the line was darker. It has always been the same as the control. This test, on the one year anniversary of Aiden's conception, is REALLY positive. If it were any other month, I would jump at the chance to get pregnant. What if this never happens again? Why the hell is my body doing this? How is it possible for someone with such incredibly erratic periods, with an interrupted pregnancy, to ovulate on the same fucking day two years in a row? When I had a period in the middle of July I was crushed, but at the same time relieved that I wouldn't be dealing with mirror cycles. Now this. I'm too upset to even think about trying to conceive. Just the thought of it causes my heart to seize up in mindless terror.
And I gave up already!!
I absolutely cannot do anything to try to get pregnant right now. I am emotionally incapable. But I hate myself a little for not trying. And I hate my body even more for making this something I even have to think about.
This is just so fucking unfair.
I gave up; I wanted no more to do with this horrible waiting, and trying, and hoping, and not getting what I so desperately wanted. I FUCKING GAVE UP!!! Two rounds of clomid and a pathetic response. Over 40 ovulation tests in 3 months because you can't ever do something the same way twice (Oh - except today). Twenty some-odd negative pregnancy tests. Three years of trying for another baby. One dead fetus. Dozens of bloody days of excruciating pain. For nothing. For a tiny wooden urn filled with ashes.
And now, when I'm trying to move on, what do you do? On the one year anniversary of the conception of your most spectacular failure, after 48 days of really confusing signals - you give me the most positive OPK test EVER.
Some of you may be confused as to why I'm so angry. After all, a glaringly positive OPK to an infertile is pretty good, right? But, I planned from the very beginning of this mess to make sure a subsequent pregnancy didn't follow the same dates as Aiden. I realize it's superstitious and crazy, but I can't bring myself to get past the irrational fear. I don't want to relive every milestone and every date from my pregnancy with Aiden. I KNOW I would be a basket case. I also don't want a "do over" pregnancy, as if Aiden never existed and the last year didn't happen. I was freaked out on Friday because I thought I ovulated then, which wasn't the same date but really close. We had sex Thursday night and I told him that was it, I wasn't risking getting pregnant this cycle. That's with the laughable assumption that it would be that easy.
I'm angry because in the 7 years I've been using OPK's, I've never had a test where the line was darker. It has always been the same as the control. This test, on the one year anniversary of Aiden's conception, is REALLY positive. If it were any other month, I would jump at the chance to get pregnant. What if this never happens again? Why the hell is my body doing this? How is it possible for someone with such incredibly erratic periods, with an interrupted pregnancy, to ovulate on the same fucking day two years in a row? When I had a period in the middle of July I was crushed, but at the same time relieved that I wouldn't be dealing with mirror cycles. Now this. I'm too upset to even think about trying to conceive. Just the thought of it causes my heart to seize up in mindless terror.
And I gave up already!!
I absolutely cannot do anything to try to get pregnant right now. I am emotionally incapable. But I hate myself a little for not trying. And I hate my body even more for making this something I even have to think about.
Friday, August 13, 2010
Learning the hard way to never say never - Part II
We had the amnio on Dec 22, two days before everyone would be closed for FOUR FUCKING DAYS for the Christmas weekend. There was a slight chance we could get the initial results back before the holiday, but absolutely none that we would get the full results back. The wait was agonizing. We were so sure we were dealing with trisomy 18 that when we got the initial results back on Dec. 23rd we were in shock. They tested for trisomy 18, 21, and 13. They all came back normal. The genetics counselor was the one to tell us this. Thank god, we didn't have to talk to the asshole doctor again. She told us that they still thought it was a trisomy, just that it might be mosaic (not present in all cells). She was careful to emphasize that the outlook was bleak no matter what the results were, given the severity of the baby's defects. She was the one to tell us what the actual defects were. She answered the questions that the doctor wouldn't. I asked her about the ethics committee and although she also didn't think they would okay an induction, she was much more sympathetic.
I don't remember exactly when we decided on a name. Neither of us wanted our baby to die without a name. We had been waiting to find out the sex before looking for one, so we didn't even have a list. Sean and I both spent hours combing through baby names, trying to find something meaningful that we would both like. Nothing struck us. Sean asked if there was any name I liked and I said there was but it wasn't one I would have used for a living child. Both of us are against really popular names and the name I liked was VERY popular. I told him what it was and he didn't hate it. A couple of days went by and I couldn't find anything better so we decided to call our baby Aiden. It seems important to use his name for the rest of this story.
Usually a full chromosomal analysis from an amnio takes 7 to 10 days. They have to culture the cells to get enough to run the tests. The genetics counselor warned us that we might not get the results before the New Year's holiday. The exact sequence of events is all jumbled now but I remember frantically searching for a humane way to end the pregnancy. I DID NOT want to give up my son, but we were convinced that he would suffer, if he wasn't already. I asked the genetics counselor and my OB what we could do. Without the hospitals cooperation, our only option was an abortion clinic in a large city 6 hours away. I called the one I was told about and asked about the procedure. At 20 weeks they do what is called a D&E. (If you've had one - please skip this part, you don't need to read it) I can't go into the detail here, you can look it up if you want, but the description was horrid. I was sobbing and barely understandable when I asked if they anesthetize the baby first. She said they give an injection to stop the heart before they do anything else. While that was reassuring, the knowledge that I couldn't see or hold my son, that he wouldn't be intact, was more than I could take. I also couldn't imagine walking into a waiting room filled with perfectly healthy babies that just weren't wanted. I've always been pro-choice but that was just too much to ask of my right then. My heart was being ripped from my chest by slow degrees and it felt like the medical community was just twisting the knife. I thought about carrying to term, although the thought of walking around for months visibly pregnant with a dying fetus was pretty horrible too. I called the genetics counselor back and she gave me some advice that I will be forever grateful for. She told me to call another fetal specialist in town, one who might have other "options". I asked my OB about him and she agreed to talk to him on my behalf. Later that day, a Monday, his nurse called me and told me that we had another option.
She told me that the doctor does reductions in the case of high order multiples. She told me that he was willing to do the same procedure for us if we paid cash and didn't tell anyone. That way, we could show up at the hospital with an already dead baby and they would treat us like any other grieving parents, instead of criminals trying to murder their baby. I got off the phone with her and WAILED. I can't even call that crying. It was the most soul wrenching, painful moment of my life. In that moment I really accepted that our son was going to die, no matter what I did. The only difference between then and later was how much Aiden would suffer. The really horrible part was that the doctor was going on vacation right after the New Year. The only time we could see him was December 30th. We would have to make the decision that day because by the time he got back it would be illegal to perform the procedure because I would be past 24 weeks. We had exactly two days to decide the single most important thing of our lives. I still wasn't completely convinced that termination was the best choice. I just did not know what to do. Even though the outcome wouldn't have changed his prognosis, I wanted to have the amnio results before I had to decide. I just needed an answer, some type of reason. I was on the phone with the genetics counselor daily. We finally got the results the morning before the consultation with the new doctor. Aiden had an extremely rare deletion of the 2nd chromosome. I've only found two living people with it. One is an adult male that has to be restrained constantly or he hurts himself, the other is a little girl that leads a fairly normal life, although she has severe delays. Neither of them had any of the defects that Aiden had.
We took this information with us to the new doctor. We had researched as much as we could in the few hours before. My sister, a medical resident, had flown in the night before to help me. She went with us to our appointment to help ask questions and give support. The doctor was a MUCH nicer, much more sympathetic person than the first one. He talked to us like we were human beings and answered all our questions. He did the same scan the first doctor had done and told us what no one had bothered to until then. Aiden's defects were very severe*, there was an extremely small chance he would live, but he would be a vegetable. The clenched hands and lack of leg movement indicated severe neurological damage. However, if he was born and his heart was stable, we would have had NO CHOICE but to hand him over for surgery to close the spina bifida and put in a feeding tube. The doctor told us that if we refused those treatments, that social services would remove Aiden from us and a judge would order it done anyway. There was not a great chance of him surviving surgeries, assuming he lived that long. So we were faced with multiple surgeries on a vegetative child, immediately after birth. We would probably never take him home, and he would never talk, walk, smile, eat on his own, and would probably be deaf and blind. I couldn't imagine the horror of having enough awareness to register hideous pain but not be able to see, hear, or communicate in any way. When he told us that, the decision was made. I wanted more than anything to hold by poor baby and tell him I loved him while he was still alive. But in the end, my reasons for wanting to carry him longer were all selfish. I wanted him with me. I wanted to smell him and and feel his skin and sing to him, just once. But I had to let him go. I had to. He was so small, so defenseless, so dependent on me to make the best decision for him. It was the hardest thing I have ever had to do when I told that doctor to do the procedure. Part of me died right then and there. One thing that I resented, and still do, is that I was the only one who could make this decision. My husband thought it was the right thing to do but would go along with whatever I could live with. Ultimately, it was all up to me. It was a crushing burden and I've never felt so alone.
After I was prepped and we said our goodbyes the doctor injected a numbing agent into my belly. It hurt more than anything had so far. My husband was holding one hand and my sister the other. We were all sobbing. I wanted to watch but couldn't bring myself to. I knew if I saw Aiden flinch I would freak. The doctor used a needle like the amnio needle to inject potassium chloride into his heart. It seemed to take forever. I imagined him moving the needle around, trying to get it placed exactly right, while Aiden moved around, completely unaware he was about to die. My sister watched the monitor and I still want to ask her if the doctor got the right spot on the first try. I can't stand the thought that Aiden hurt for more than a second so I haven't been brave enough to ask. It was over so quick. One long, painful stick, some valium, and a dead baby. I was pretty numb. I know I went home and somehow interacted with my daughter, I don't know how. We had decided to wait until the following morning (Thursday) to go to my OB's office and from there to the hospital to be induced. That way we would be sure of having my OB on call. So that was our last night with both our children in the same house. One alive, and one dead.
I can't believe how long this is getting. I think I can finish in one more post, I have to stop before I get a migraine. In a way the next post will be the easiest one to write, as I've done it before. At this point all the agony was past and we had only to say our final goodbyes. One more physical trauma to get through.
*I did this elsewhere but I wanted it connected to this post. Here is the most complete list of Aiden's defects, taken from the records I have:
-Hydrocephalus (water on the brain) in both lateral ventricles and the third ventricle
-type II Arnold Chiari malformation (brain sits too low and is squeezed into the spinal chord - this is an extremely painful condition that the first doctor did not tell me about even though I specifically asked)
-agenesis of the corpus collosum (the structure separating the hemispheres of the brain is missing)
-meningomyelocele in the lower spine (spina bifida - the spinal chord is outside the body)
-ventral septal defect, atrial septal defect, and ventricular hypertrophy (heart defects, caused by the failure of the neural tube to close in early development)
-bilateral (both sides) cleft lip and palate.
-none of the three ultrasounds found a stomach bubble. Most likely there was no stomach or the trachea did not reach the stomach.
-enlarged kidneys
-too much amniotic fluid
-severe growth restriction
-clenched hands
-rocker bottom feet (his feet looked perfect after he was born but his legs were deformed)
I don't remember exactly when we decided on a name. Neither of us wanted our baby to die without a name. We had been waiting to find out the sex before looking for one, so we didn't even have a list. Sean and I both spent hours combing through baby names, trying to find something meaningful that we would both like. Nothing struck us. Sean asked if there was any name I liked and I said there was but it wasn't one I would have used for a living child. Both of us are against really popular names and the name I liked was VERY popular. I told him what it was and he didn't hate it. A couple of days went by and I couldn't find anything better so we decided to call our baby Aiden. It seems important to use his name for the rest of this story.
Usually a full chromosomal analysis from an amnio takes 7 to 10 days. They have to culture the cells to get enough to run the tests. The genetics counselor warned us that we might not get the results before the New Year's holiday. The exact sequence of events is all jumbled now but I remember frantically searching for a humane way to end the pregnancy. I DID NOT want to give up my son, but we were convinced that he would suffer, if he wasn't already. I asked the genetics counselor and my OB what we could do. Without the hospitals cooperation, our only option was an abortion clinic in a large city 6 hours away. I called the one I was told about and asked about the procedure. At 20 weeks they do what is called a D&E. (If you've had one - please skip this part, you don't need to read it) I can't go into the detail here, you can look it up if you want, but the description was horrid. I was sobbing and barely understandable when I asked if they anesthetize the baby first. She said they give an injection to stop the heart before they do anything else. While that was reassuring, the knowledge that I couldn't see or hold my son, that he wouldn't be intact, was more than I could take. I also couldn't imagine walking into a waiting room filled with perfectly healthy babies that just weren't wanted. I've always been pro-choice but that was just too much to ask of my right then. My heart was being ripped from my chest by slow degrees and it felt like the medical community was just twisting the knife. I thought about carrying to term, although the thought of walking around for months visibly pregnant with a dying fetus was pretty horrible too. I called the genetics counselor back and she gave me some advice that I will be forever grateful for. She told me to call another fetal specialist in town, one who might have other "options". I asked my OB about him and she agreed to talk to him on my behalf. Later that day, a Monday, his nurse called me and told me that we had another option.
She told me that the doctor does reductions in the case of high order multiples. She told me that he was willing to do the same procedure for us if we paid cash and didn't tell anyone. That way, we could show up at the hospital with an already dead baby and they would treat us like any other grieving parents, instead of criminals trying to murder their baby. I got off the phone with her and WAILED. I can't even call that crying. It was the most soul wrenching, painful moment of my life. In that moment I really accepted that our son was going to die, no matter what I did. The only difference between then and later was how much Aiden would suffer. The really horrible part was that the doctor was going on vacation right after the New Year. The only time we could see him was December 30th. We would have to make the decision that day because by the time he got back it would be illegal to perform the procedure because I would be past 24 weeks. We had exactly two days to decide the single most important thing of our lives. I still wasn't completely convinced that termination was the best choice. I just did not know what to do. Even though the outcome wouldn't have changed his prognosis, I wanted to have the amnio results before I had to decide. I just needed an answer, some type of reason. I was on the phone with the genetics counselor daily. We finally got the results the morning before the consultation with the new doctor. Aiden had an extremely rare deletion of the 2nd chromosome. I've only found two living people with it. One is an adult male that has to be restrained constantly or he hurts himself, the other is a little girl that leads a fairly normal life, although she has severe delays. Neither of them had any of the defects that Aiden had.
We took this information with us to the new doctor. We had researched as much as we could in the few hours before. My sister, a medical resident, had flown in the night before to help me. She went with us to our appointment to help ask questions and give support. The doctor was a MUCH nicer, much more sympathetic person than the first one. He talked to us like we were human beings and answered all our questions. He did the same scan the first doctor had done and told us what no one had bothered to until then. Aiden's defects were very severe*, there was an extremely small chance he would live, but he would be a vegetable. The clenched hands and lack of leg movement indicated severe neurological damage. However, if he was born and his heart was stable, we would have had NO CHOICE but to hand him over for surgery to close the spina bifida and put in a feeding tube. The doctor told us that if we refused those treatments, that social services would remove Aiden from us and a judge would order it done anyway. There was not a great chance of him surviving surgeries, assuming he lived that long. So we were faced with multiple surgeries on a vegetative child, immediately after birth. We would probably never take him home, and he would never talk, walk, smile, eat on his own, and would probably be deaf and blind. I couldn't imagine the horror of having enough awareness to register hideous pain but not be able to see, hear, or communicate in any way. When he told us that, the decision was made. I wanted more than anything to hold by poor baby and tell him I loved him while he was still alive. But in the end, my reasons for wanting to carry him longer were all selfish. I wanted him with me. I wanted to smell him and and feel his skin and sing to him, just once. But I had to let him go. I had to. He was so small, so defenseless, so dependent on me to make the best decision for him. It was the hardest thing I have ever had to do when I told that doctor to do the procedure. Part of me died right then and there. One thing that I resented, and still do, is that I was the only one who could make this decision. My husband thought it was the right thing to do but would go along with whatever I could live with. Ultimately, it was all up to me. It was a crushing burden and I've never felt so alone.
After I was prepped and we said our goodbyes the doctor injected a numbing agent into my belly. It hurt more than anything had so far. My husband was holding one hand and my sister the other. We were all sobbing. I wanted to watch but couldn't bring myself to. I knew if I saw Aiden flinch I would freak. The doctor used a needle like the amnio needle to inject potassium chloride into his heart. It seemed to take forever. I imagined him moving the needle around, trying to get it placed exactly right, while Aiden moved around, completely unaware he was about to die. My sister watched the monitor and I still want to ask her if the doctor got the right spot on the first try. I can't stand the thought that Aiden hurt for more than a second so I haven't been brave enough to ask. It was over so quick. One long, painful stick, some valium, and a dead baby. I was pretty numb. I know I went home and somehow interacted with my daughter, I don't know how. We had decided to wait until the following morning (Thursday) to go to my OB's office and from there to the hospital to be induced. That way we would be sure of having my OB on call. So that was our last night with both our children in the same house. One alive, and one dead.
I can't believe how long this is getting. I think I can finish in one more post, I have to stop before I get a migraine. In a way the next post will be the easiest one to write, as I've done it before. At this point all the agony was past and we had only to say our final goodbyes. One more physical trauma to get through.
*I did this elsewhere but I wanted it connected to this post. Here is the most complete list of Aiden's defects, taken from the records I have:
-Hydrocephalus (water on the brain) in both lateral ventricles and the third ventricle
-type II Arnold Chiari malformation (brain sits too low and is squeezed into the spinal chord - this is an extremely painful condition that the first doctor did not tell me about even though I specifically asked)
-agenesis of the corpus collosum (the structure separating the hemispheres of the brain is missing)
-meningomyelocele in the lower spine (spina bifida - the spinal chord is outside the body)
-ventral septal defect, atrial septal defect, and ventricular hypertrophy (heart defects, caused by the failure of the neural tube to close in early development)
-bilateral (both sides) cleft lip and palate.
-none of the three ultrasounds found a stomach bubble. Most likely there was no stomach or the trachea did not reach the stomach.
-enlarged kidneys
-too much amniotic fluid
-severe growth restriction
-clenched hands
-rocker bottom feet (his feet looked perfect after he was born but his legs were deformed)
Learning the hard way to never say never - Part I
I've heard this twice in the last week:
"I don't know why I need prenatal testing, I won't terminate no matter what is wrong with the baby."
It's a wonderful sentiment, that those people would love a baby no matter what. It's what we would all like to believe we are capable of. Unfortunately that sentiment is born of ignorance and naiveté. Those people don't really understand what "no matter what" means. I'm not saying this to be harsh or to criticize. I really hope the vast majority of people never find out what that means. I just need to say how much it hurts to hear that, and how much I would give to have that kind of ignorance.
Four days from now marks the anniversary of the conception of my only son. The son we wanted badly and tried so hard to get. The son that we had to let go. Some people may think we are horrible people for deciding to end a pregnancy. Some people think that we were playing God. Some people are kinder and just think that while they don't condemn us for our decision, they would never make the same one.
I've been meaning for awhile to record all of Aiden's story here and now is a good time. The discussion of prenatal testing and termination are so much a part of his story that it feels right to talk about both at the same time.
One year ago I was on my first round of Clomid after trying for 18 months to get pregnant again. I had developed a luteal phase defect on top of all my other problems so I asked my OB/GYN for help. We couldn't afford an RE so it was just a case of trying the Clomid and see if it worked. It did. Seven days after I ovulated I started bleeding. I cried myself to sleep thinking that my period had started too early again and I wasn't going to get pregnant. The next day the bleeding stopped and didn't start again. Five days later I felt weird and took a pregnancy test. It was positive. I was over the moon. This was so easy! We were going to get our second child and then we were done. No more trying desperately to get pregnant, no more miserable pregnancies. One more beautiful baby to cuddle and love.
My OB tested my HCG levels because there was a decent risk of an ectopic. The numbers did not double in 48 hours. I spent the next few days panicking. I was sure I was having a miscarriage. My OB put me on progesterone to try to help the pregnancy. At 7 weeks we had an ultrasound and everything looked fine. The baby was measuring a little small but the doctor never mentioned that to me. I found out later. So I was happy again. The pregnancy wasn't nearly as hard as my first had been. I was pretty nauseous but doing okay with work. I had planned to get the early prenatal testing done but time slipped away from me and it was too late, so I decided to just wait for the quad screen. The heartbeat was fine, I assumed the baby was okay. If felt like time was flying. Before I knew it I was feeling the baby moving, starting to show, and getting really excited about the 20 week ultrasound. I had waited until after I was "miscarriage safe" and not told anyone until after 12 weeks (wow - was I naive). I told everyone at work when my ultrasound was. We read "I'm a big sister" to my daughter every night. I even thought about taking my daughter with me to the ultrasound (thank GOD I changed my mind).
Friday, December 18th. My husband and I took the whole day off. We went out to lunch to celebrate the new baby and my new job. We meandered through a cute baby store and almost bought a bunch of big sister stuff for our 3 year old. We waltzed into the OB's office so happy and self-assured. I had planned just right. My bladder was full but not too full so I wasn't squirmy and miserable. The tech smeared the goo and went to work.
The very first thing I saw was the very large black circles on the top of the baby's head. I knew that meant fluid. In a weird moment of absolute denial, I said nothing to the tech or my husband. We talked about how different this one was. It was behaving and not jumping all over the place, making measurements hard. The tech was pretty quiet. I didn't notice. She asked if we wanted to know the sex and we said yes. She found the genitals and labeled them "boy stuff", it made us laugh. She left the room for a few minutes to see if the doctor wanted a look. I still wasn't alarmed.
She said we could go to the waiting room and the doctor would call us back. We laughed and talked quietly about how strange it would be to have a boy. I asked my husband if he thought his brother, who had lost his twin boys at 8 months, would be upset. We talked about names and wondered if Kira would be upset about not getting a sister.
The nurse called us back. The doctor sat down in front of me and said, point blank: "There are several things about the baby that concern me."
I remember my eyes filing with tears. I tried to listen but the list was so LONG, I just tuned it out after a while. I kept thinking, "did I do this?" I thought about the early signs, that we should have miscarried. I questioned why he was still alive. I thought I should have told Sean about the fluid, than he wouldn't have been so shocked. I thought I deserved this. This was the disaster I was expecting.
My doctor made it clear from the beginning that the prognosis was very poor. She refused to predict if he would live or not, or really explain what she meant by very poor. But it was pretty obvious what she thought. She said it looked like a trisomy - probably 18. She said trisomy 18 is universally fatal in boys. She told us that the hospital here, even though it is catholic, would permit an early induction (before the age of viability) if the fetal anomalies were incompatible with life. Apparently there is an ethics committee that okay's these things. She referred us to the maternal fetal specialist for an amnio. This happened on a Friday at 4pm. The earliest they could get us in was Tuesday.
I don't remember what we did the next 4 days. We didn't go back to work. We called our family and friends and told them something was terribly wrong. We cried a lot. We talked about what we would do. I researched trisomy 18 and tried to decide whether to carry to term or not.
Tuesday came and we went to our appointment. When the doctor came in he introduced himself and then just stared at us. I was a little disconcerted but so stressed out that I didn't give it much thought. I told him that we knew it was bad and that we wanted to know if he thought the defects were incompatible with life. We wanted to know if the brain defects were causing him pain and if it looked like his heart would make it through a full term pregnancy. He didn't really respond, just told us that he had to take a look first. He did a high level ultrasound that included an echo cardiogram. He didn't really talk to us the whole time. They couldn't get a look at the baby's feet because he wasn't really moving his legs. What I had thought were kicks were actually the baby arching his back and throwing out his arms. It looked like his legs were paralyzed. On the higher resolution I could clearly see the cleft lip and palette, the clenched hands, and the water on the brain. I cried the whole time.
The doctor finished and left to put his notes together. He came back in to do the amnio which was quick and painful and then talked to us. He also said the prognosis was very poor. But that was ALL he said. When we asked if he thought the ethics committee would allow induction he was very emphatic that they would not. He avoided all of my specific questions about the baby's brain and heart. He told me the brain defects were mild and would not cause the baby any pain. He also assumed the baby had trisomy 18. He referred us to a patient's blog, saying that his parents "celebrated his life" when I asked what happened to their baby. When I asked "what do we do now" he said, "just wait". The bastard didn't even have the guts to tell me that this was a fatal condition. He brushed off or ignored every question we had, and I got the impression it was because he was totally against the idea of interrupting the pregnancy.
I have to stop here, next time I will get into the amnio results and what happened after that.
"I don't know why I need prenatal testing, I won't terminate no matter what is wrong with the baby."
It's a wonderful sentiment, that those people would love a baby no matter what. It's what we would all like to believe we are capable of. Unfortunately that sentiment is born of ignorance and naiveté. Those people don't really understand what "no matter what" means. I'm not saying this to be harsh or to criticize. I really hope the vast majority of people never find out what that means. I just need to say how much it hurts to hear that, and how much I would give to have that kind of ignorance.
Four days from now marks the anniversary of the conception of my only son. The son we wanted badly and tried so hard to get. The son that we had to let go. Some people may think we are horrible people for deciding to end a pregnancy. Some people think that we were playing God. Some people are kinder and just think that while they don't condemn us for our decision, they would never make the same one.
I've been meaning for awhile to record all of Aiden's story here and now is a good time. The discussion of prenatal testing and termination are so much a part of his story that it feels right to talk about both at the same time.
One year ago I was on my first round of Clomid after trying for 18 months to get pregnant again. I had developed a luteal phase defect on top of all my other problems so I asked my OB/GYN for help. We couldn't afford an RE so it was just a case of trying the Clomid and see if it worked. It did. Seven days after I ovulated I started bleeding. I cried myself to sleep thinking that my period had started too early again and I wasn't going to get pregnant. The next day the bleeding stopped and didn't start again. Five days later I felt weird and took a pregnancy test. It was positive. I was over the moon. This was so easy! We were going to get our second child and then we were done. No more trying desperately to get pregnant, no more miserable pregnancies. One more beautiful baby to cuddle and love.
My OB tested my HCG levels because there was a decent risk of an ectopic. The numbers did not double in 48 hours. I spent the next few days panicking. I was sure I was having a miscarriage. My OB put me on progesterone to try to help the pregnancy. At 7 weeks we had an ultrasound and everything looked fine. The baby was measuring a little small but the doctor never mentioned that to me. I found out later. So I was happy again. The pregnancy wasn't nearly as hard as my first had been. I was pretty nauseous but doing okay with work. I had planned to get the early prenatal testing done but time slipped away from me and it was too late, so I decided to just wait for the quad screen. The heartbeat was fine, I assumed the baby was okay. If felt like time was flying. Before I knew it I was feeling the baby moving, starting to show, and getting really excited about the 20 week ultrasound. I had waited until after I was "miscarriage safe" and not told anyone until after 12 weeks (wow - was I naive). I told everyone at work when my ultrasound was. We read "I'm a big sister" to my daughter every night. I even thought about taking my daughter with me to the ultrasound (thank GOD I changed my mind).
Friday, December 18th. My husband and I took the whole day off. We went out to lunch to celebrate the new baby and my new job. We meandered through a cute baby store and almost bought a bunch of big sister stuff for our 3 year old. We waltzed into the OB's office so happy and self-assured. I had planned just right. My bladder was full but not too full so I wasn't squirmy and miserable. The tech smeared the goo and went to work.
The very first thing I saw was the very large black circles on the top of the baby's head. I knew that meant fluid. In a weird moment of absolute denial, I said nothing to the tech or my husband. We talked about how different this one was. It was behaving and not jumping all over the place, making measurements hard. The tech was pretty quiet. I didn't notice. She asked if we wanted to know the sex and we said yes. She found the genitals and labeled them "boy stuff", it made us laugh. She left the room for a few minutes to see if the doctor wanted a look. I still wasn't alarmed.
She said we could go to the waiting room and the doctor would call us back. We laughed and talked quietly about how strange it would be to have a boy. I asked my husband if he thought his brother, who had lost his twin boys at 8 months, would be upset. We talked about names and wondered if Kira would be upset about not getting a sister.
The nurse called us back. The doctor sat down in front of me and said, point blank: "There are several things about the baby that concern me."
I remember my eyes filing with tears. I tried to listen but the list was so LONG, I just tuned it out after a while. I kept thinking, "did I do this?" I thought about the early signs, that we should have miscarried. I questioned why he was still alive. I thought I should have told Sean about the fluid, than he wouldn't have been so shocked. I thought I deserved this. This was the disaster I was expecting.
My doctor made it clear from the beginning that the prognosis was very poor. She refused to predict if he would live or not, or really explain what she meant by very poor. But it was pretty obvious what she thought. She said it looked like a trisomy - probably 18. She said trisomy 18 is universally fatal in boys. She told us that the hospital here, even though it is catholic, would permit an early induction (before the age of viability) if the fetal anomalies were incompatible with life. Apparently there is an ethics committee that okay's these things. She referred us to the maternal fetal specialist for an amnio. This happened on a Friday at 4pm. The earliest they could get us in was Tuesday.
I don't remember what we did the next 4 days. We didn't go back to work. We called our family and friends and told them something was terribly wrong. We cried a lot. We talked about what we would do. I researched trisomy 18 and tried to decide whether to carry to term or not.
Tuesday came and we went to our appointment. When the doctor came in he introduced himself and then just stared at us. I was a little disconcerted but so stressed out that I didn't give it much thought. I told him that we knew it was bad and that we wanted to know if he thought the defects were incompatible with life. We wanted to know if the brain defects were causing him pain and if it looked like his heart would make it through a full term pregnancy. He didn't really respond, just told us that he had to take a look first. He did a high level ultrasound that included an echo cardiogram. He didn't really talk to us the whole time. They couldn't get a look at the baby's feet because he wasn't really moving his legs. What I had thought were kicks were actually the baby arching his back and throwing out his arms. It looked like his legs were paralyzed. On the higher resolution I could clearly see the cleft lip and palette, the clenched hands, and the water on the brain. I cried the whole time.
The doctor finished and left to put his notes together. He came back in to do the amnio which was quick and painful and then talked to us. He also said the prognosis was very poor. But that was ALL he said. When we asked if he thought the ethics committee would allow induction he was very emphatic that they would not. He avoided all of my specific questions about the baby's brain and heart. He told me the brain defects were mild and would not cause the baby any pain. He also assumed the baby had trisomy 18. He referred us to a patient's blog, saying that his parents "celebrated his life" when I asked what happened to their baby. When I asked "what do we do now" he said, "just wait". The bastard didn't even have the guts to tell me that this was a fatal condition. He brushed off or ignored every question we had, and I got the impression it was because he was totally against the idea of interrupting the pregnancy.
I have to stop here, next time I will get into the amnio results and what happened after that.
Thursday, August 12, 2010
Close encounters of the fangy kind
While standing in chest deep water in the middle of a stream, one of these ever so friendly creatures happened by. He was less than amused to find me in his way. I was less than amused to find myself in his way, especially since the only way I could rectify that was to back up, into the deeper water. So I got a quick lesson in how to tread water while your waders are filling up and your heart rate is up to about 280.
I love my job.
Everyone will be pleased to know that both the snake and myself made it through the encounter unharmed. And trust me, I was WAY more scared of him than he was of me.
Wednesday, August 4, 2010
My brain is on vacation
Since the rest of me can't go.
I am really wanting to get Aiden's full story permanently posted on here but I just haven't had the time to allow myself to fall apart. I've written bits and pieces on Glow and other places and it is always hard. I always end up sobbing hard. I think it will be cathartic to do this and it is really important to me. I just can't seem to get it done. I will keep trying, hopefully soon I can get it finished.
I miss you Aiden. I think of you every day. Kisses and hugs little alligator.
I am really wanting to get Aiden's full story permanently posted on here but I just haven't had the time to allow myself to fall apart. I've written bits and pieces on Glow and other places and it is always hard. I always end up sobbing hard. I think it will be cathartic to do this and it is really important to me. I just can't seem to get it done. I will keep trying, hopefully soon I can get it finished.
I miss you Aiden. I think of you every day. Kisses and hugs little alligator.
Monday, August 2, 2010
Self pity
That has got to be the most destructive emotion there is. Sorry about the whiny, self indulgent post last time. I really hope I didn't hurt anyone, if I did I'm very sorry. Just to be clear, I'm certainly not jealous of my friend's most recent pregnancy, I'm jealous that she has two kids. I only wanted two and it feels really unfair that I only got to have one. Yesterday I was thinking about how petty that complaint was and realized that how I feel about my friend's two kids is probably how a lot of people feel about my one kid. Why am I so special that my first pregnancy ended in a beautiful, healthy child? Why can't I just be grateful?
I was feeling sorry for myself the other day. I had a tough week and was feeling very overwhelmed when my friend called to ask if I would watch her kids. I really, really wish there was something I could do to help my friend. I don't understand her desire to have eight kids, or to be pregnant with an infant at home, but I do understand her pain. I understand that she is angry with her body and feeling hopeless so I wish I could ease that for her. I wish she could have her eight kids. I wish I could have my two. I wish all the people I read could have their one. And I wish I could get rid of petty and hurtful jealousies and moments of self pity.
Fortunately I was smart enough to keep my mouth shut and just be there for my friend.
Even before I talked to her I was feeling bad for my reaction. After I talked to her I felt even worse. She kept apologizing, saying she knew her loss was not as big as mine (I don't agree and I told her that). I felt about an inch tall. I only have one loss to her more than a dozen. Who am I to be jealous? Idiot.
Anyway - I wanted to get that off my chest and talk about what happened last week that sent me into a tail spin.
I was taking the 24 hour HAZ.WOPER class for the oil spill stuff. It's your standard safety class that spends many hours telling you not to stick a fork in an electric socket. The instructor was interesting and had lots of "war" stories, which unfortunately involved lots of dead children. He was at the tsunami and nine eleven so we got a first hand glimpse of some of the really horrible tragedies the world has seen in the last ten years. It was really hard to hear some of the stuff he talked about. On the second day of class I asked if there was somewhere I could look for a list of chemicals and the long term health effects of exposure. Over my ten year career as a chemist I was exposed to some nasty stuff, in some cases very large quantities of nasty stuff. I wanted to know if any of them were mutagenic or carcinogenic. He laughingly asked me if my kids glowed. I laughed for a second and looked away. My mental reply was, "Well, no, but one died of birth defects." I thought about telling him he should be careful what he says, but I didn't think it was really worth upsetting anyone. And I find I don't like to share Aiden and his story with just anyone. That exchange and the horror stories really colored my whole week. I frequently found myself dwelling on the more painful parts of my loss throughout the week. It's good to finally be home and to not have anymore things to take care of.
Our first MAPP class is tonight so I should have something more cheerful to talk about next.
I was feeling sorry for myself the other day. I had a tough week and was feeling very overwhelmed when my friend called to ask if I would watch her kids. I really, really wish there was something I could do to help my friend. I don't understand her desire to have eight kids, or to be pregnant with an infant at home, but I do understand her pain. I understand that she is angry with her body and feeling hopeless so I wish I could ease that for her. I wish she could have her eight kids. I wish I could have my two. I wish all the people I read could have their one. And I wish I could get rid of petty and hurtful jealousies and moments of self pity.
Fortunately I was smart enough to keep my mouth shut and just be there for my friend.
Even before I talked to her I was feeling bad for my reaction. After I talked to her I felt even worse. She kept apologizing, saying she knew her loss was not as big as mine (I don't agree and I told her that). I felt about an inch tall. I only have one loss to her more than a dozen. Who am I to be jealous? Idiot.
Anyway - I wanted to get that off my chest and talk about what happened last week that sent me into a tail spin.
I was taking the 24 hour HAZ.WOPER class for the oil spill stuff. It's your standard safety class that spends many hours telling you not to stick a fork in an electric socket. The instructor was interesting and had lots of "war" stories, which unfortunately involved lots of dead children. He was at the tsunami and nine eleven so we got a first hand glimpse of some of the really horrible tragedies the world has seen in the last ten years. It was really hard to hear some of the stuff he talked about. On the second day of class I asked if there was somewhere I could look for a list of chemicals and the long term health effects of exposure. Over my ten year career as a chemist I was exposed to some nasty stuff, in some cases very large quantities of nasty stuff. I wanted to know if any of them were mutagenic or carcinogenic. He laughingly asked me if my kids glowed. I laughed for a second and looked away. My mental reply was, "Well, no, but one died of birth defects." I thought about telling him he should be careful what he says, but I didn't think it was really worth upsetting anyone. And I find I don't like to share Aiden and his story with just anyone. That exchange and the horror stories really colored my whole week. I frequently found myself dwelling on the more painful parts of my loss throughout the week. It's good to finally be home and to not have anymore things to take care of.
Our first MAPP class is tonight so I should have something more cheerful to talk about next.
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