Friday, February 5, 2010
Dreading going to sleep
I'm very tired. I haven't slept a full night since stopping the ambien. Man, I miss that stuff. I'm too afraid of ending up an addict like my mom to try it again, though. We bereaved mothers really need a chat room. That way all the sleepless ones can get together and chat until we fall asleep, drooling, on the keyboard. I guess I will give bed a try, there is always the benadryl (or the vodka).
Thursday, February 4, 2010
The list
I've been thinking about this for awhile. What keeps overwhelming me and making me cry, "why?" is how long the list of defects was. I still can't understand how such a tiny little thing with so many, many problems could have lived and kept growing. I look back now at the betas and the early bleeding and think maybe if I hadn't taken the progesterone my body would have rejected this pregnancy very early on. I'll never know and I can't say right now if I will take the progesterone in the future. Anyway, here is the most complete list of Aiden's problems, starting with the actual diagnosis and probable cause of the defects. For some reason it is important to me to get it all written down in one place. No single report that we have lists everything.
chromosomal deletion 2q(35-37.1)
Hydrocephaly
Arnold Chiari malformation type II (brain is sitting too low and going into the spinal chord)
Spina Bifida
Clenched hands (indicates severe neurological problem)
bilateral (both sides) cleft lip and palate
rocker-bottom feet and some kind of deformity in the bones of the legs
Heart: ventral septal and atrial septal defects
enlarged kidneys
no stomach bubble seen in multiple u/s - could indicate that the esophagus doesn't reach the stomach or there was no stomach
polyhydramnios - indicates he couldn't swallow or that the fluid didn't reach the stomach
Intra-uterine growth restriction was likely - he was already measuring 2-3 weeks behind
All of this and I still have to convince myself that he would never have made it full term, let alone had any kind of decent life.
Why?
chromosomal deletion 2q(35-37.1)
Hydrocephaly
Arnold Chiari malformation type II (brain is sitting too low and going into the spinal chord)
Spina Bifida
Clenched hands (indicates severe neurological problem)
bilateral (both sides) cleft lip and palate
rocker-bottom feet and some kind of deformity in the bones of the legs
Heart: ventral septal and atrial septal defects
enlarged kidneys
no stomach bubble seen in multiple u/s - could indicate that the esophagus doesn't reach the stomach or there was no stomach
polyhydramnios - indicates he couldn't swallow or that the fluid didn't reach the stomach
Intra-uterine growth restriction was likely - he was already measuring 2-3 weeks behind
All of this and I still have to convince myself that he would never have made it full term, let alone had any kind of decent life.
Why?
Salt in the wounds
I'm getting really, really tired of telling total strangers what happened. It has not gotten any easier. I still can't do it without crying.
I tried a couple of weeks ago to call all of our bills and let them know why we were late and that we would be struggling for several months. I got lots of "I'm sorry for your tragedy" and absolutely no workable solutions on getting things payed. Everyone wanted unreasonably high payments and they wanted them in the next two weeks. Even after I told them I will not get a full paycheck until the END of February. The last thing I want to worry about right now is money. I'm paying for the things we want to keep (the 13 and 10 year old cars, the apartment we are living in, the student loans) and everyone else can just screw off. All they have done is jack up our rates for no reason (before this happened - they did it to everyone)and harass us.
So after telling about 10 people from various credit card companies and other bills we went to a bankruptcy lawyer and had to tell him too. I will love him forever, though. The very first thing he did was curse republicans and baptists. I told him not to get me started on either one :)
Then today I went back to my OB because I found a mysterious lump and freaked out. Turns out it was just a blocked gland and nothing to worry about. However, the one person I wanted most to avoid was in the waiting room. It was the woman at work who's baby shower I went to, the week before our horrible ultrasound. She was due last week but is obviously still pregnant. Thank god, she didn't notice me. But then the stupid intake people didn't bother to look at my chart AGAIN and couldn't figure out why I hadn't had a period since August. I told her in a pissed off voice that I miscarried and she still asked a bunch of questions and got huffy. I did complain to the doctor and she put big highlighted notes all over my chart, so hopefully it won't happen again. But, damn! When will I be able to stop telling total strangers what happened? It's not the casual "how many children do you have", it's the having to explain other things - the lack of money for bills, the lack of a period.
It rips off the scab every time and most of these people don't really have the right to see into our pain. I just want to crawl into a hole and stay there until the scab is a little tougher.
I tried a couple of weeks ago to call all of our bills and let them know why we were late and that we would be struggling for several months. I got lots of "I'm sorry for your tragedy" and absolutely no workable solutions on getting things payed. Everyone wanted unreasonably high payments and they wanted them in the next two weeks. Even after I told them I will not get a full paycheck until the END of February. The last thing I want to worry about right now is money. I'm paying for the things we want to keep (the 13 and 10 year old cars, the apartment we are living in, the student loans) and everyone else can just screw off. All they have done is jack up our rates for no reason (before this happened - they did it to everyone)and harass us.
So after telling about 10 people from various credit card companies and other bills we went to a bankruptcy lawyer and had to tell him too. I will love him forever, though. The very first thing he did was curse republicans and baptists. I told him not to get me started on either one :)
Then today I went back to my OB because I found a mysterious lump and freaked out. Turns out it was just a blocked gland and nothing to worry about. However, the one person I wanted most to avoid was in the waiting room. It was the woman at work who's baby shower I went to, the week before our horrible ultrasound. She was due last week but is obviously still pregnant. Thank god, she didn't notice me. But then the stupid intake people didn't bother to look at my chart AGAIN and couldn't figure out why I hadn't had a period since August. I told her in a pissed off voice that I miscarried and she still asked a bunch of questions and got huffy. I did complain to the doctor and she put big highlighted notes all over my chart, so hopefully it won't happen again. But, damn! When will I be able to stop telling total strangers what happened? It's not the casual "how many children do you have", it's the having to explain other things - the lack of money for bills, the lack of a period.
It rips off the scab every time and most of these people don't really have the right to see into our pain. I just want to crawl into a hole and stay there until the scab is a little tougher.
Wednesday, February 3, 2010
Purple baby Aiden
For some reason my daughter (Kira, 3 years old) was talking about Aiden a lot today. When I picked her up from daycare she was babbling at a teacher she likes, who was just nodding and smiling and not really listening. She told the teacher that she was the big sister and baby Aiden died because he was "really so small". The teacher didn't catch it but I heard her and told her she was right.
Later at home she suddenly started talking about him again and she said "I have a baby in my tummy (referring to herself, not me), little baby Aiden, he'll come out tomorrow and we get to see him." As I was trying desperately to think of something to say, she piped up with "he'll be purple," which at the time I thought was funny. I was thinking like willy wonka purple, which is probably how she meant it, but now that I am sad again it has taken on a more sinister meaning.
Kira keeps fighting with her friend because she says she is the big sister to her friend's 4 month old brother. Kira likes to give him his bottle and tickle his feet. Alyssa gets really upset when Kira says she is the big sister. I never know what to say. She is a big sister, but she doesn't get to BE the big sister. It's so sad.
Ugh - I hate this trying to figure out how to respond to her and it is so heart-wrenching when she brings this stuff up out of the blue. Poor kid - I wish I could at least make it better for her.
Later at home she suddenly started talking about him again and she said "I have a baby in my tummy (referring to herself, not me), little baby Aiden, he'll come out tomorrow and we get to see him." As I was trying desperately to think of something to say, she piped up with "he'll be purple," which at the time I thought was funny. I was thinking like willy wonka purple, which is probably how she meant it, but now that I am sad again it has taken on a more sinister meaning.
Kira keeps fighting with her friend because she says she is the big sister to her friend's 4 month old brother. Kira likes to give him his bottle and tickle his feet. Alyssa gets really upset when Kira says she is the big sister. I never know what to say. She is a big sister, but she doesn't get to BE the big sister. It's so sad.
Ugh - I hate this trying to figure out how to respond to her and it is so heart-wrenching when she brings this stuff up out of the blue. Poor kid - I wish I could at least make it better for her.
Monday, February 1, 2010
my closet in the corner
There was a discussion on Glow in the woods about how isolating losing a baby is, how lonely dead baby mamas feel. It got me thinking about my desperate search for people like me.
When things looked bad at the very beginning of this pregnancy (we didn't know until 20 weeks that it was doomed to start with) I asked my sister how common miscarriages really were. She's a doctor starting her specialty in OB and she told me that it is less common to see a patient that hasn't had a miscarriage.
After my loss, when I started telling people what had happened, I was flooded by stories from other women.
My neighbor had multiple losses, Kira's daycare teacher lost a baby at 5 months, My sister in law lost twins at 8 months. The list goes on and on.
So it got me thinking, if this is so common - why do we feel so alone? The only conclusion I can come to, based on my experience, is that people just don't talk about it. I feel shunned at work. Only one person said anything about my loss, everyone else acted like I was never gone or made vague references to "when you were gone."
I'm not sure if this is just a fear of our reaction (no one wants a bawling, hysterical woman?), an inability to process tragedy unless its personal, or a fear of it "catching." Whatever it is, it isolates people when they most need support and its not fair.
I have been feeling especially vulnerable and alone because we chose to end our pregnancy. Women who have had miscarriages are treated badly by society, they are placed in a corner and ignored at best. I feel like I am in the closet in the corner. It is very difficult to find other pregnancy terminations online, even among the large ALI group of blogs. I think this has more to do with women fearing other's reactions than a lack of reluctant members of this dismal club.
I wish it was more accepted to find support for losses like ours. I keep looking at blog lists and wondering where I fit in. Technically, medically, our loss was an abortion. I call it a stillbirth because I birthed my son, and he was still. It was just early and his heart was stopped so that he wouldn't suffer. He was born at 21 weeks, which means that if his heart had stopped spontaneously, it would still be called a miscarriage. There are generally two categories on blog lists and support groups: stillbirth/neonatal loss and miscarriages. Late term miscarriages that were delivered and induced miscarriages/abortions/medical terminations don't really fit into either category. It's not that I think I deserve a special grief badge - I really don't want to know what it's like to birth a child and watch it die - but I want to feel accepted and known. I want to be with other people like me.
When things looked bad at the very beginning of this pregnancy (we didn't know until 20 weeks that it was doomed to start with) I asked my sister how common miscarriages really were. She's a doctor starting her specialty in OB and she told me that it is less common to see a patient that hasn't had a miscarriage.
After my loss, when I started telling people what had happened, I was flooded by stories from other women.
My neighbor had multiple losses, Kira's daycare teacher lost a baby at 5 months, My sister in law lost twins at 8 months. The list goes on and on.
So it got me thinking, if this is so common - why do we feel so alone? The only conclusion I can come to, based on my experience, is that people just don't talk about it. I feel shunned at work. Only one person said anything about my loss, everyone else acted like I was never gone or made vague references to "when you were gone."
I'm not sure if this is just a fear of our reaction (no one wants a bawling, hysterical woman?), an inability to process tragedy unless its personal, or a fear of it "catching." Whatever it is, it isolates people when they most need support and its not fair.
I have been feeling especially vulnerable and alone because we chose to end our pregnancy. Women who have had miscarriages are treated badly by society, they are placed in a corner and ignored at best. I feel like I am in the closet in the corner. It is very difficult to find other pregnancy terminations online, even among the large ALI group of blogs. I think this has more to do with women fearing other's reactions than a lack of reluctant members of this dismal club.
I wish it was more accepted to find support for losses like ours. I keep looking at blog lists and wondering where I fit in. Technically, medically, our loss was an abortion. I call it a stillbirth because I birthed my son, and he was still. It was just early and his heart was stopped so that he wouldn't suffer. He was born at 21 weeks, which means that if his heart had stopped spontaneously, it would still be called a miscarriage. There are generally two categories on blog lists and support groups: stillbirth/neonatal loss and miscarriages. Late term miscarriages that were delivered and induced miscarriages/abortions/medical terminations don't really fit into either category. It's not that I think I deserve a special grief badge - I really don't want to know what it's like to birth a child and watch it die - but I want to feel accepted and known. I want to be with other people like me.
One month
Dear Aiden,
I'ts been one month today that you have been gone from me, if you count by the day of the month. But when you are pregnant, you count by weeks so I lit candles for you on Friday, since that's the day of the week that you were born. I miss you. Today I am filled with regret and I have had a list buzzing in my head for a couple of days now. It will probably only get longer as time goes on, but hopefully it will eventually get easier to forgive myself. I love you. I wish you could have met your big sister. God, she would have been wonderful to you.
Rest in peace, little one.
The things I regret:
I didn't get a 3D ultrasound after we knew you were going to die. It didn't occur to me until I saw that on a board I had posted on but didn't return to until you were already gone.
I didn't kiss you. Your skin was starting to peel and your poor little face was so deformed, all I could bring myself to do was kiss you on the forehead where the little hat was covering up hydrocephaly. I feel badly about that now because of the next thing.
I mourn the baby I dreamed of, not the baby I had. When I think of you alive, I think of a happy, smiling baby, not what you really would have been. Sometimes this feels like abandoning you.
This one I just thought of: we don't have a picture of our whole family. I don't even have a picture of me pregnant with you that I know of. I should have had Kira come to the hospital to say goodbye. She is such a tough girl, she probably would have been fine.
I deeply, deeply regret the way you died. It was the best way we had available to keep you from suffering too much, but I still think it was probably not painless to you and I'll always wonder if you were scared.
I regret that the only way I could protect you was to let you go. Mommy's are supposed to fix things. They just don't make a band-aid for this.
And right now, I regret that I am in a hurry to stop grieving so I can get off the meds and try again. I'm not trying to replace you, but I don't have much time and I still wanted a chance at a living baby and Kira getting to be the big sister. That feels terribly selfish and unfair to you. If I didn't have fertility problems I could give myself more time with just you, it's not fair.
I miss you. I love you.
Mommy
I'ts been one month today that you have been gone from me, if you count by the day of the month. But when you are pregnant, you count by weeks so I lit candles for you on Friday, since that's the day of the week that you were born. I miss you. Today I am filled with regret and I have had a list buzzing in my head for a couple of days now. It will probably only get longer as time goes on, but hopefully it will eventually get easier to forgive myself. I love you. I wish you could have met your big sister. God, she would have been wonderful to you.
Rest in peace, little one.
The things I regret:
I didn't get a 3D ultrasound after we knew you were going to die. It didn't occur to me until I saw that on a board I had posted on but didn't return to until you were already gone.
I didn't kiss you. Your skin was starting to peel and your poor little face was so deformed, all I could bring myself to do was kiss you on the forehead where the little hat was covering up hydrocephaly. I feel badly about that now because of the next thing.
I mourn the baby I dreamed of, not the baby I had. When I think of you alive, I think of a happy, smiling baby, not what you really would have been. Sometimes this feels like abandoning you.
This one I just thought of: we don't have a picture of our whole family. I don't even have a picture of me pregnant with you that I know of. I should have had Kira come to the hospital to say goodbye. She is such a tough girl, she probably would have been fine.
I deeply, deeply regret the way you died. It was the best way we had available to keep you from suffering too much, but I still think it was probably not painless to you and I'll always wonder if you were scared.
I regret that the only way I could protect you was to let you go. Mommy's are supposed to fix things. They just don't make a band-aid for this.
And right now, I regret that I am in a hurry to stop grieving so I can get off the meds and try again. I'm not trying to replace you, but I don't have much time and I still wanted a chance at a living baby and Kira getting to be the big sister. That feels terribly selfish and unfair to you. If I didn't have fertility problems I could give myself more time with just you, it's not fair.
I miss you. I love you.
Mommy
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