22 weeks, 5 weeks + 2 days post rupture
Thank you to every one who offered to send me tiny baby outfits or who found places to order them online. I have two (one a 500g size and one a 750g size) on order from the UK and a few of you are sending things along in the mail. Hopefully they will all arrive soon, so I can relax about having something for the baby to wear.
Yesterday I watched the movie Rabbit Hole. You may remember that Nicole Kidman was up for an Academy Award for her performance, although I don't think the movie was otherwise recognized. It should have been. It was wonderful. Even though it was about a couple who lost an older child than a baby (I think he was about 3), I could relate to so many of the emotions they felt, and the situations they found themselves in. Especially the conversation that Nicole Kidman has with her on-screen mother in the basement that ends with "it's what you have instead of your son". So true. See it, if you can.
As for me, I'm trucking a long. I'm feeling the baby move a lot more yesterday and today and I haven't leaked since Aidan's Day that I can tell. This makes me both happy and nervous. Happy: "Yeah I haven't leaked, baby is moving, things must be okay in there!" and Nervous: "This is about the same amount of time between my last leaking episodes (9 days), so will it be today? Tonight? Tomorrow? Will I lose a lot? If I leak, will the baby get trapped in some uncomfortable or compromising position? Quick baby! Get your head down in the biggest pocket of fluid and tuck in your arms & legs!"
I've also started to feel "Braxton Hicks" like tightenings of my uterus on occasion. These seem to occur if the baby is moving a lot or if I'm changing positions. Like I'll roll over, or lay down, or get up and I feel it tighten. It often happens too if I REALLY have to pee. Usually it lasts less than 30 seconds and doesn't hurt exactly...but it makes me VERY VERY NERVOUS. My cervix has shortened from 3.2cm at 16 weeks to 2.5cm at my last scan...so I do NOT need any sort of cramping or contractions to make things worse. Also, this is what started to happen in the few weeks before I delivered Aidan. I started to get more and more 'Braxton Hicks' type tightenings (could have been weak contractions, irritation of the uterus from all the bleeding I had, or the start of an infection...who the hell knows at this point?). So when this happened a few times yesterday it drags my hopes down. I'll mention it to the doctor on Tuesday, and inquire about the possibility of p17 shots...but I don't know with all the other things compromising my pregnancy if they'll go for that.
But, must look at the positives. I'm 22 weeks. It's Saturday. It's a nice day. I might even go outside in my backyard for the first time this year...and I'm taking my baby with me.
Did anyone with pPROM out there get Braxton Hicks like pains after rupturing? Did it signify anything in retrospect?
Saturday, April 30, 2011
Friday, April 29, 2011
Baby clothes
21 weeks + 6 days, 5 weeks + 1 day post rupture
In the weeks leading up to Aidan's birth I had begun to prepare for his possible death. One thing I knew I wanted to have ready for when he was born was an outfit. I wanted to dress him in clothing I had picked out and felt was 'right' for him. I ordered a couple of outfits from 'Preemie Proud'. One was a boy outfit, one was a girl outfit and one was a neutral white. I wanted the gender specific outfit to take pictures in and a white one to send the baby to the funeral home in. Since I didn't know if Aidan was a boy or a girl, I had to buy three. They were each less than $10 and arrived quickly in the mail. I had ordered their smallest size, knowing that Aidan was going to be tiny. He was measuring 500 grams (about 1 lb) at our doctor's appointment at 21-ish weeks. Their smallest size was "Micro preemie 1-3 lbs".
Aidan arrived at 580 grams or 1 lb, 4 1/2 oz. Exactly on track for his gestational age.
The nurse who cleaned him up after he died and brought him back to us, dressed him in a little white knitted outfit, complete with a light blue hat and tiny white knitted socks. It fit him perfectly and was cute. However, I quickly undressed him from that and put him in 'MY' outfit. I loved him. This nurse did not love him. Was not his mother. It was important that he wear what I had picked.
It was quickly apparent that my outfit was too big. He could have made a tent out of it. It was too wide and required the sleeves be rolled up almost all the way. The hat would fall off or cover his eyes. My outfit made him look even smaller than he was. The "Micro Preemie clothes sized 1-3 lbs" was much more of a 2 1/2 to 3 lb baby outfit. It made me sad. All I had wanted was to pick out an outfit for my baby, but the smallest one I could find, he would never grow into. The 'ward stock' the hospital had, fit him better.
I am, of course, running into the same problem this time. I would love to have an outfit ready for Acorn. Even if it was just plain white with no decoration. Most importantly I would like it to be small...really small. 1lb baby small (just in case). No longer than 10 inches from neckline to hem and no wider than 8 or so inches across the sleeves.
I have looked on all preemie clothes websites I could find. All of their 'micro preemie' sizes go up to 3 lbs. Much too large. All of their clothes are "NICU friendly" with snaps and velcro in places normal baby clothes do not have.
But what if your baby never grows? Never makes it to the NICU? It's also all gender specific...and I still don't know what Acorn is.
I have even looked at doll clothes websites. Some of them are probably small enough length wise, but I'm not sure about the proportions (fat arms? Torsos too skinny or too wide?). Also they are often way too elaborate and look like shrunk down beauty pageant outfits rather than living (dead?) baby clothes.
I think I need a store entitled "Dead Babies R Us" to find what I'm looking for. Or maybe more appropriate "Dead Fetuses' R Us". Maybe their clothes would be small enough.
Where did you get the outfit that your child was dressed in? Do you know anyone who makes outfits small enough for the tiniest of preemies?
In the weeks leading up to Aidan's birth I had begun to prepare for his possible death. One thing I knew I wanted to have ready for when he was born was an outfit. I wanted to dress him in clothing I had picked out and felt was 'right' for him. I ordered a couple of outfits from 'Preemie Proud'. One was a boy outfit, one was a girl outfit and one was a neutral white. I wanted the gender specific outfit to take pictures in and a white one to send the baby to the funeral home in. Since I didn't know if Aidan was a boy or a girl, I had to buy three. They were each less than $10 and arrived quickly in the mail. I had ordered their smallest size, knowing that Aidan was going to be tiny. He was measuring 500 grams (about 1 lb) at our doctor's appointment at 21-ish weeks. Their smallest size was "Micro preemie 1-3 lbs".
Aidan arrived at 580 grams or 1 lb, 4 1/2 oz. Exactly on track for his gestational age.
The nurse who cleaned him up after he died and brought him back to us, dressed him in a little white knitted outfit, complete with a light blue hat and tiny white knitted socks. It fit him perfectly and was cute. However, I quickly undressed him from that and put him in 'MY' outfit. I loved him. This nurse did not love him. Was not his mother. It was important that he wear what I had picked.
It was quickly apparent that my outfit was too big. He could have made a tent out of it. It was too wide and required the sleeves be rolled up almost all the way. The hat would fall off or cover his eyes. My outfit made him look even smaller than he was. The "Micro Preemie clothes sized 1-3 lbs" was much more of a 2 1/2 to 3 lb baby outfit. It made me sad. All I had wanted was to pick out an outfit for my baby, but the smallest one I could find, he would never grow into. The 'ward stock' the hospital had, fit him better.
I am, of course, running into the same problem this time. I would love to have an outfit ready for Acorn. Even if it was just plain white with no decoration. Most importantly I would like it to be small...really small. 1lb baby small (just in case). No longer than 10 inches from neckline to hem and no wider than 8 or so inches across the sleeves.
I have looked on all preemie clothes websites I could find. All of their 'micro preemie' sizes go up to 3 lbs. Much too large. All of their clothes are "NICU friendly" with snaps and velcro in places normal baby clothes do not have.
But what if your baby never grows? Never makes it to the NICU? It's also all gender specific...and I still don't know what Acorn is.
I have even looked at doll clothes websites. Some of them are probably small enough length wise, but I'm not sure about the proportions (fat arms? Torsos too skinny or too wide?). Also they are often way too elaborate and look like shrunk down beauty pageant outfits rather than living (dead?) baby clothes.
I think I need a store entitled "Dead Babies R Us" to find what I'm looking for. Or maybe more appropriate "Dead Fetuses' R Us". Maybe their clothes would be small enough.
Where did you get the outfit that your child was dressed in? Do you know anyone who makes outfits small enough for the tiniest of preemies?
Tuesday, April 26, 2011
Stresses and Placental Collection Services
21 weeks + 3 days, 4 weeks + 5 days post rupture.
After my last post I felt a little bad. You see, while this whole experience is hard on me, I cannot forget it is also hard for the people around me who love me the most. Poor Brian. I just wish I could grant him time off. All he wants to do is be at home. His heart is hurting and he's afraid for me and his baby. Instead he has to deal with work, housework, chores, and car troubles (yes, our car is still being a pain in the ass...just what we need at the moment right?). He's doing a fantastic job, but it takes its toll. He's not sleeping much at night and he looks more tired and sad than I've seen him in, well, a year.
My mom is feeling it too. She's been having a few health problems herself lately. Nothing life threatening, but any condition that causes recurrent pain is no fun and gets you down. Now that we've added my current situation, she has sadness and worry for me too. She's taken some time off work and instead of relaxing at home, focusing on herself, she's spending it with me. She's been here the last couple of days getting me water, making me lunch and generally helping keep the house tidy. It's much appreciated and I think she feels better doing those small chores, and keeping me company, than sitting at home worrying about me. But I wish she didn't have to. I wish I could help HER out, since I'm supposed to be the young, healthy, one.
It all gets to be too much sometimes for everyone. Sometimes life is just too hard.
One thing that got figured out today, which made me feel better, is that I spoke to the Program Director at the laboratory which is going to come and collect chunks of my placenta after delivery. As a nurse (and really anyone who works in a field that requires detailed organization), I know how Dr. K. just saying "oh we'll take samples of your placenta after delivery", doesn't necessarily translate into that getting done. I've been the nurse in those situations, where doctors have promised a patient something seemingly simple...and then it takes 3 nurses, 8 phone calls, and mucho paper work to actually get it done. So, being the type A person that I am, I wanted to speak to the person who ACTUALLY does the sampling and ask him some questions. I e-mailed Dr. K. yesterday (who was MUCH more helpful in his responses this time) and he forwarded me to Dr. R.S. the Program Director.
I called Dr. R.S. around noon today at his direct line and he picked up on the second ring (a real person answering the phone?! AND the person who I actually wanted to speak to?! How novel!). He reassured me that he and his colleagues are on call 24/7 and only need about one hour's advance notice prior to delivery in order for them to get to the hospital from wherever they live. They collect the placenta within 30 minutes after delivery (or as close to as possible...30 minutes isn't a HARD rule...it just guarantees the best sample). He e-mailed me the form that clearly lays out the collection team's pager number and I have now printed off a copy to give to the medical staff when I arrive at the hospital. I'm thinking of high-lighting it, bolding it and possibly taping it to my forehead.
Dr. R.S. was very nice, and did assure me that not all placentas they collect come from nicely scheduled C-section deliveries, where everyone knows about it 3 weeks in advance. Some do indeed come from 'unexpected' early deliveries where notice is short. Also he was careful to explain that we need to sign a consent form and that my identity would not be shared beyond the research team. A 'code' will be assigned to my 'case' and I won't be identified. I know from working in research that this process is held in the highest esteem...patients MUST give informed consent. Can't TOUCH them, their information or any of their cast off bits unless they specifically give you consent to do so. I find this a bit humourous because honestly if one of them told me it was required to hack off my left ARM and stand in the street telling everyone in sight about my Breus mole at the top of my lungs, I'd be willing to do it if it could give them any info to help prevent this from happening again or to understand this condition better.
I know that to them my abnormal placenta is a few dots on a slide, tissue in a jar, and a report on a piece of paper. To me it's my baby(ies?) dying, my health in jeopardy, my family's sadness compounded, our future in question. It means so much more to me than any researcher could ever understand. If nothing else, I would like some answers...and a better shot at a healthy pregnancy and full term baby.
Have you ever been involved in a research study?
After my last post I felt a little bad. You see, while this whole experience is hard on me, I cannot forget it is also hard for the people around me who love me the most. Poor Brian. I just wish I could grant him time off. All he wants to do is be at home. His heart is hurting and he's afraid for me and his baby. Instead he has to deal with work, housework, chores, and car troubles (yes, our car is still being a pain in the ass...just what we need at the moment right?). He's doing a fantastic job, but it takes its toll. He's not sleeping much at night and he looks more tired and sad than I've seen him in, well, a year.
My mom is feeling it too. She's been having a few health problems herself lately. Nothing life threatening, but any condition that causes recurrent pain is no fun and gets you down. Now that we've added my current situation, she has sadness and worry for me too. She's taken some time off work and instead of relaxing at home, focusing on herself, she's spending it with me. She's been here the last couple of days getting me water, making me lunch and generally helping keep the house tidy. It's much appreciated and I think she feels better doing those small chores, and keeping me company, than sitting at home worrying about me. But I wish she didn't have to. I wish I could help HER out, since I'm supposed to be the young, healthy, one.
It all gets to be too much sometimes for everyone. Sometimes life is just too hard.
One thing that got figured out today, which made me feel better, is that I spoke to the Program Director at the laboratory which is going to come and collect chunks of my placenta after delivery. As a nurse (and really anyone who works in a field that requires detailed organization), I know how Dr. K. just saying "oh we'll take samples of your placenta after delivery", doesn't necessarily translate into that getting done. I've been the nurse in those situations, where doctors have promised a patient something seemingly simple...and then it takes 3 nurses, 8 phone calls, and mucho paper work to actually get it done. So, being the type A person that I am, I wanted to speak to the person who ACTUALLY does the sampling and ask him some questions. I e-mailed Dr. K. yesterday (who was MUCH more helpful in his responses this time) and he forwarded me to Dr. R.S. the Program Director.
I called Dr. R.S. around noon today at his direct line and he picked up on the second ring (a real person answering the phone?! AND the person who I actually wanted to speak to?! How novel!). He reassured me that he and his colleagues are on call 24/7 and only need about one hour's advance notice prior to delivery in order for them to get to the hospital from wherever they live. They collect the placenta within 30 minutes after delivery (or as close to as possible...30 minutes isn't a HARD rule...it just guarantees the best sample). He e-mailed me the form that clearly lays out the collection team's pager number and I have now printed off a copy to give to the medical staff when I arrive at the hospital. I'm thinking of high-lighting it, bolding it and possibly taping it to my forehead.
Dr. R.S. was very nice, and did assure me that not all placentas they collect come from nicely scheduled C-section deliveries, where everyone knows about it 3 weeks in advance. Some do indeed come from 'unexpected' early deliveries where notice is short. Also he was careful to explain that we need to sign a consent form and that my identity would not be shared beyond the research team. A 'code' will be assigned to my 'case' and I won't be identified. I know from working in research that this process is held in the highest esteem...patients MUST give informed consent. Can't TOUCH them, their information or any of their cast off bits unless they specifically give you consent to do so. I find this a bit humourous because honestly if one of them told me it was required to hack off my left ARM and stand in the street telling everyone in sight about my Breus mole at the top of my lungs, I'd be willing to do it if it could give them any info to help prevent this from happening again or to understand this condition better.
I know that to them my abnormal placenta is a few dots on a slide, tissue in a jar, and a report on a piece of paper. To me it's my baby(ies?) dying, my health in jeopardy, my family's sadness compounded, our future in question. It means so much more to me than any researcher could ever understand. If nothing else, I would like some answers...and a better shot at a healthy pregnancy and full term baby.
Have you ever been involved in a research study?
Sunday, April 24, 2011
Martyr
21 weeks + 1 day, 4 weeks + 3 days post rupture.
Martyr: 1. a person who is put to death or endures great suffering on behalf of any belief, principle, or cause (often religious). 2. a person who undergoes severe or constant suffering.
I have no religious beliefs. Definitely none that I'd be willing to die over, so I don't really fall into definition 1. But I think I have a lock on definition 2.
I have become a bed rest martyr. I've now spent a month in bed. My only outings have been to the doctors. I have not been outside for any other reason, nor I have I sat at my kitchen table. Almost every meal I've eaten has been in my bed. I have made nothing for myself beyond grabbing a yogurt out of the fridge or peeling the paper back on a muffin. I drink water, I watch TV, I occasionally shuffle from bed to couch to couch, back to bed, and I play Solitaire on this lap top. Lather, rinse, repeat. Ad nauseum.
This is all boring as hell, as you can imagine. One or two days of doing nothing is a vacation, something fun to look forward to especially if done with friends, or if really good movies are on TV, or if the weather is shit. Anymore than that becomes a chore. However, I can take the boredom, the lack of social contact, the financial hardship of being off work and confined to my house. That is all no big deal. It is the physical pain of inactivity that gets me. My back is constantly sore. I often have a dull headache, likely due to neck pain. I can feel the muscles in my legs and back becoming less dense, tense and weaker. If I could test it I'm sure my stamina would be shit right now. I know walking up the stairs in my house has become more difficult, although there are days that I don't even attempt that. Fear of leaking, of compromising the baby keeps me immobile.
And even this, this physical de-conditioning would be okay, would be worth it, if I felt I was working towards something. And I know, I know...everyone's going to comment and say something like "but you are working towards something Emily...don't give up hope" and so on and so forth. But really, I don't feel like it's worth it, until I reach AT LEAST 24 weeks. To get there, I have to pass here first. Can't get to 24 without first passing all the weeks before it. But right now, every day I spend in bed gets me and Acorn literally nowhere. If he were born tomorrow, or the day after that, or hey even next week or the week after that...we'd be in the same place as we were today. Acorn would still die. He might die a little heavier or more obviously 'baby like', but he'd still be dead. My husband and I would still be two time baby lost parents. And there are a lot of days of bed rest, a lot of hours of pain and suffering and waiting between now and "hope". And even then at 24 weeks, hope is small. I will only start to feel more 'hopeful' at 26 weeks +. And that is almost 5 weeks away.
It feels like a very long time.
Sometimes too long.
I remember back a few months ago, when I first got pregnant with Acorn. We were nervous. We were hopeful. We tried to think positively. Most likely, things would be fine, right? They are for so many people, why not us? But I remember thinking to myself "if this baby isn't the baby that gets to come home, healthy and in a car seat, I hope I miscarry early on...I don't want to suffer the way I did last time".
Even that wish didn't come true, and it was a pretty shitty wish to begin with.
A huge part of me just wants to get it over with. Get on with the grieving and the sadness and the loss. I know what that looks like, what that feels like. I know how badly it will hurt, how hard each day will be. How people will try to be kind, but not know what to say. How I'll have to pull up my socks again and continue on. Physically and mentally whip myself back into shape. Maybe it would be easier to have hope if this pregnancy had gone badly in a different way. If I had experienced complications with my heart, or if maybe the baby had some congenital defect that the extent would only be known at delivery, or if I was on bed rest to prevent a shortening cervix, but my membranes were still intact. Hope seems more tangible and accessible in those instances. The situations more of an unknown.
It is hard to imagine exactly the same events that lead to Aidan's death working out any differently this time around. I try to imagine it. I try to picture it on a daily basis. Imagine Acorn being born, able to cry, small but otherwise healthy. Taken to the NICU. Given a diagnosis of "wow, he looks good!". Imagine me leaving the hospital, but returning the next day, the next week (the next month?) to see my baby get bigger, stronger, healthier and closer to coming home in that car seat. Given a clean bill of health. Small, but mighty. I've seen it lots of times as a nurse in the NICU. Lots and lots of babies go home.
But the fear and the sadness and the dread of what happened last time make it really hard to commit my heart to that outcome. The hope I held in my heart got broken last time and I don't think it will ever really be the same.
Addendum: After reading comment #2 on here, I just had to note that my husband and I had joked if this baby is a boy we should totally name him "Harry Potter" a.k.a. "the boy who lived" and if it's a girl her name should be "Buffy" as Buffy the Vampire Slayer came back from the dead...twice.
Martyr: 1. a person who is put to death or endures great suffering on behalf of any belief, principle, or cause (often religious). 2. a person who undergoes severe or constant suffering.
I have no religious beliefs. Definitely none that I'd be willing to die over, so I don't really fall into definition 1. But I think I have a lock on definition 2.
I have become a bed rest martyr. I've now spent a month in bed. My only outings have been to the doctors. I have not been outside for any other reason, nor I have I sat at my kitchen table. Almost every meal I've eaten has been in my bed. I have made nothing for myself beyond grabbing a yogurt out of the fridge or peeling the paper back on a muffin. I drink water, I watch TV, I occasionally shuffle from bed to couch to couch, back to bed, and I play Solitaire on this lap top. Lather, rinse, repeat. Ad nauseum.
This is all boring as hell, as you can imagine. One or two days of doing nothing is a vacation, something fun to look forward to especially if done with friends, or if really good movies are on TV, or if the weather is shit. Anymore than that becomes a chore. However, I can take the boredom, the lack of social contact, the financial hardship of being off work and confined to my house. That is all no big deal. It is the physical pain of inactivity that gets me. My back is constantly sore. I often have a dull headache, likely due to neck pain. I can feel the muscles in my legs and back becoming less dense, tense and weaker. If I could test it I'm sure my stamina would be shit right now. I know walking up the stairs in my house has become more difficult, although there are days that I don't even attempt that. Fear of leaking, of compromising the baby keeps me immobile.
And even this, this physical de-conditioning would be okay, would be worth it, if I felt I was working towards something. And I know, I know...everyone's going to comment and say something like "but you are working towards something Emily...don't give up hope" and so on and so forth. But really, I don't feel like it's worth it, until I reach AT LEAST 24 weeks. To get there, I have to pass here first. Can't get to 24 without first passing all the weeks before it. But right now, every day I spend in bed gets me and Acorn literally nowhere. If he were born tomorrow, or the day after that, or hey even next week or the week after that...we'd be in the same place as we were today. Acorn would still die. He might die a little heavier or more obviously 'baby like', but he'd still be dead. My husband and I would still be two time baby lost parents. And there are a lot of days of bed rest, a lot of hours of pain and suffering and waiting between now and "hope". And even then at 24 weeks, hope is small. I will only start to feel more 'hopeful' at 26 weeks +. And that is almost 5 weeks away.
It feels like a very long time.
Sometimes too long.
I remember back a few months ago, when I first got pregnant with Acorn. We were nervous. We were hopeful. We tried to think positively. Most likely, things would be fine, right? They are for so many people, why not us? But I remember thinking to myself "if this baby isn't the baby that gets to come home, healthy and in a car seat, I hope I miscarry early on...I don't want to suffer the way I did last time".
Even that wish didn't come true, and it was a pretty shitty wish to begin with.
A huge part of me just wants to get it over with. Get on with the grieving and the sadness and the loss. I know what that looks like, what that feels like. I know how badly it will hurt, how hard each day will be. How people will try to be kind, but not know what to say. How I'll have to pull up my socks again and continue on. Physically and mentally whip myself back into shape. Maybe it would be easier to have hope if this pregnancy had gone badly in a different way. If I had experienced complications with my heart, or if maybe the baby had some congenital defect that the extent would only be known at delivery, or if I was on bed rest to prevent a shortening cervix, but my membranes were still intact. Hope seems more tangible and accessible in those instances. The situations more of an unknown.
It is hard to imagine exactly the same events that lead to Aidan's death working out any differently this time around. I try to imagine it. I try to picture it on a daily basis. Imagine Acorn being born, able to cry, small but otherwise healthy. Taken to the NICU. Given a diagnosis of "wow, he looks good!". Imagine me leaving the hospital, but returning the next day, the next week (the next month?) to see my baby get bigger, stronger, healthier and closer to coming home in that car seat. Given a clean bill of health. Small, but mighty. I've seen it lots of times as a nurse in the NICU. Lots and lots of babies go home.
But the fear and the sadness and the dread of what happened last time make it really hard to commit my heart to that outcome. The hope I held in my heart got broken last time and I don't think it will ever really be the same.
Addendum: After reading comment #2 on here, I just had to note that my husband and I had joked if this baby is a boy we should totally name him "Harry Potter" a.k.a. "the boy who lived" and if it's a girl her name should be "Buffy" as Buffy the Vampire Slayer came back from the dead...twice.
Friday, April 22, 2011
Not a good sign
20 weeks + 6 days, 4 weeks + 1 day post rupture
Things were hard on Aidan's day. It started the night before. After almost 9 days of no leaking and feeling like "hey, maybe I've sealed", I started leaking fluid again. It never fails. The night before I go to medical appointments and ultrasounds. It's awful. Worst of all was that last time I leaked, by the morning it had pretty much stopped. Not so this time...
So we arrive at the clinic for 8:45am after I'd had about 3 to 4 hours sleep. I'm seen fairly quickly and the tech gets all her measurements. Then we wait a bit and Dr. K. comes into see us after reviewing the scan. He starts out with the positive. My fluid levels despite leaking were 7.39 cm, adequate for lung development. Also, despite the placenta's VERY abnormal appearance, the uterine arteries continue to get good blood flow to the baby and there continues to be good blood flow through the cord. My cervix is shortening, considered 'borderline' at 2.5cm.
However, the baby is measuring quite behind. Dr. K. can't really tell us why this is, as the baby is getting good blood flow. I'm not surprised that the baby is measuring a little small...he always did, right from week 7, when he measured 6 weeks 2 days. However, some of his measurements are WAY further behind now...more like 2 weeks rather than 1. This concerns me, in that I wonder if something else is going on. I remember clearly from my NICU days that a 'normal anatomy scan' doesn't always mean there isn't subtle genetic defects and/or congenital abnormalities and sometimes these reveal themselves prior to delivery as 'poor growth'.
The growth of the baby was one of the big reasons we continued the pregnancy in Aidan's case. He always measured right on track, despite having NO fluid. We didn't feel that we could end a pregnancy where the baby continued to show signs of 'doing well' despite his poor environment. I fear that's not the case with Acorn. Dr. K. didn't seem too concerned about it, just said that it's something we'll have to watch (of course, what can he do about it? Answer: Nothing)...but in my mind it could be a game changer. I absolutely DO NOT want this baby to suffer and in my mind, poor growth is an indicator of suffering. It makes me very upset and less hopeful for Acorn.
Also to give you an indication of how damaged my placenta is, a normal FULL TERM placenta is anywhere between 2 to 4 cm in thickness. 4 cm is even bordering on 'too thick'. My placenta is currently (at 21 weeks!) SEVEN cm thick!!! This is an increase of 3 cm in 5 weeks!!! On ultrasound it looks more like a ball then a pancake. It's frightening and of course without fluid, Acorn is mushed up right against it. It's heart breaking and will likely only get worse.
Then we talked with Dr. K. about genetics. We first asked if he had ever seen a recurrent Breus mole. Answer: Nope.
Let's take a minute here and process that. He's NEVER seen this happen twice in once person. Ever. I'm his first. And this is a guy who when you search to the medical journal "Placenta" has 142 published articles to his name. He runs a placental clinic where he's seen thousands of pregnant women over his career. And I'm his first recurrent Breus mole.
Holy fuck.
Which brings him to the conclusion that it is in fact, genetic in origin. As he says, most diseases do have a genetic component and he and his lab buddies *think* they may know the gene responsible. It's called something like WINT2 (we didn't write it down, now I wish I had). Basically what he's offering us, is that at the time of delivery if the Bio Bank personnel comes and takes a chunk of my placenta, they may be able to tell whether A) this gene is present or absent within the placenta's tissues and B) if it's present, then is it actually 'turned on' and doing it's job. We were all agreeable to this plan. As he said, it means that if we decide to go for a 'next time', they might be able, through CVS screening around 11 weeks to tell us if this gene is doing it's job, giving us a better indicator as to whether I would (for the THIRD TIME???!!!) develop a Breus mole or not. I didn't ask him about pre-implantation diagnosis, but if we were able to detect this gene, then I wonder if we could do IVF and avoid a doomed pregnancy entirely? It would be something I'd definitely consider.
Then I asked whether my pPROM is directly related to the Breus mole, because really that's our biggest concern right now. He said that a lot of placental conditions can be associated with ruptured membranes. If the placenta's not functioning or forming correctly you often get bleeding and that can be a big cause of ruptured membranes. I did bring to his attention that I've had very little bleeding with this pregnancy so far, and I did have some 'weird' feelings in my cervix way back weeks 14-17 which could (?) have been my cervix funnelling or otherwise not working right. He agreed with me that I could have a secondary incompetent cervix and that the ruptured membranes might be in addition to the Breus mole and not a direct cause. On one hand I'm somewhat gratified to hear this (I wanted to yell, I KNEW IT!!!), but on the other "shit, another problem we might have to face again in the future, even WITH a perfectly normal placenta".
The plan now is to meet with the Bio Bank people and for them to get consent to take a chunk of my placenta when I deliver (Go right ahead, hack away at it. It's not like it's doing me or Acorn any good now). I'm a little nervous about delaying this meeting until our next appointment (May 3rd) because things won't be in place to collect the sample if I go into labour before then. The Bio Bank people have someone on call 24/7, but I've since learned via their website they need to collect the placenta sample within 30 minutes (!!!) of delivery. I can tell you, no medical personnel involved when I delivered Aidan was worried about placenta sampling at 30 minutes post delivery...they were worried about my tanking blood pressure, starting an IV and giving me antibiotics. You know, keeping me alive. I might e-mail Dr. K. about this, (despite his prior uninformative and less than helpful responses via e-mail) because it's bothering me a lot. I want this in place NOW...not almost 2 weeks from now.
Anyway, after our discussion with Dr. K. I met with Dr. S. He agreed that I should continue seeing Dr. K. as he's the placental specialist and has more experience with placental matters. We also asked that if we were to get pregnant again, would it be possible to see Dr. K. early in the pregnancy until the placenta is confirmed to be working well, and then switch to him, to more closely monitor my heart. He felt this was a reasonable plan and I'm glad. I like Dr. K. better and I would feel more comfortable with him reviewing me earlier 'next time'.
Then I had my ECHO. At least we can check that test off the list.
It happened after the ECHO tech left and I was getting dressed, ready to leave. I stood up.
And GUSHED fluid. Like a ton. It felt like a full cup's worth. Soaked my pad, my underwear and the front of my pants. If my life was a TV show and I was 37 weeks (which I would be cuz no one ever has a preemie or a dead baby on TV) they would have done a funny montage with me in a wheelchair being pushed to the hospital, me yelling at my husband how "this is all your fault", me labouring with all the blue draping around me, and then cut to shot of healthy infant. Yeah!
Instead, I started to whimper and cry, trying to mop up my pants in the ultrasound room. There it goes. All that fluid Acorn and I worked so hard to build up. The fluid that the doctor's are considering my 'one saving grace'. The one thing that was 'better' than my pregnancy with Aidan. All gone in a matter of seconds. Can I build it back up? Who the hell knows.
Brian hurried me to the washroom where I cleaned up as best I could and then, without seeing anyone else we left. I couldn't take anymore. It was my dead son's birthday, my current baby is in trouble, fluid is gushing out, I can't stop it and all I wanted to do was go home and go to sleep. So I did. But first, through my tears, I ate a cupcake in honour of Aidan. It was his day and I had to do something for him.
I'm feeling less hopeful. Maybe I'll seal over a bit and build up more fluid, but I'm still at risk of infection and my cervix is shortening, not a good sign. And my baby is measuring further and further behind despite getting good blood flow. Maybe it's measurement error, maybe it's not. Maybe it means something else is wrong, maybe not, but it's not a good sign. My placenta is getting thicker and thicker by the week. It's still getting good blood flow to the baby...but who knows how long that will last? Plus with all the clots building up, will the placenta start to detach anytime soon? Abruptions are deadly for baby and sometimes for moms too. And if I go into labour in the same way I did last time, I don't know if the Bio Bank people will be in time to collect the samples. I NEED to know if there is a way to avoid a 'next time'. It would heal my heart somewhat to know there IS a cause and it CAN be avoided. That it's not inevitable. That I might be able to have a normal placenta and a healthy, full term, baby (hell, I'd take a healthier placenta and a slightly premature but healthy baby).
Because honestly, I don't think Acorn is going to be that baby. I think too much is stacked against him.
Thank you again to everyone who sent pictures and messages for Aidan and us. They were all beautiful and so heartfelt. Definitely the highlight of my day.
Things were hard on Aidan's day. It started the night before. After almost 9 days of no leaking and feeling like "hey, maybe I've sealed", I started leaking fluid again. It never fails. The night before I go to medical appointments and ultrasounds. It's awful. Worst of all was that last time I leaked, by the morning it had pretty much stopped. Not so this time...
So we arrive at the clinic for 8:45am after I'd had about 3 to 4 hours sleep. I'm seen fairly quickly and the tech gets all her measurements. Then we wait a bit and Dr. K. comes into see us after reviewing the scan. He starts out with the positive. My fluid levels despite leaking were 7.39 cm, adequate for lung development. Also, despite the placenta's VERY abnormal appearance, the uterine arteries continue to get good blood flow to the baby and there continues to be good blood flow through the cord. My cervix is shortening, considered 'borderline' at 2.5cm.
However, the baby is measuring quite behind. Dr. K. can't really tell us why this is, as the baby is getting good blood flow. I'm not surprised that the baby is measuring a little small...he always did, right from week 7, when he measured 6 weeks 2 days. However, some of his measurements are WAY further behind now...more like 2 weeks rather than 1. This concerns me, in that I wonder if something else is going on. I remember clearly from my NICU days that a 'normal anatomy scan' doesn't always mean there isn't subtle genetic defects and/or congenital abnormalities and sometimes these reveal themselves prior to delivery as 'poor growth'.
The growth of the baby was one of the big reasons we continued the pregnancy in Aidan's case. He always measured right on track, despite having NO fluid. We didn't feel that we could end a pregnancy where the baby continued to show signs of 'doing well' despite his poor environment. I fear that's not the case with Acorn. Dr. K. didn't seem too concerned about it, just said that it's something we'll have to watch (of course, what can he do about it? Answer: Nothing)...but in my mind it could be a game changer. I absolutely DO NOT want this baby to suffer and in my mind, poor growth is an indicator of suffering. It makes me very upset and less hopeful for Acorn.
Also to give you an indication of how damaged my placenta is, a normal FULL TERM placenta is anywhere between 2 to 4 cm in thickness. 4 cm is even bordering on 'too thick'. My placenta is currently (at 21 weeks!) SEVEN cm thick!!! This is an increase of 3 cm in 5 weeks!!! On ultrasound it looks more like a ball then a pancake. It's frightening and of course without fluid, Acorn is mushed up right against it. It's heart breaking and will likely only get worse.
Then we talked with Dr. K. about genetics. We first asked if he had ever seen a recurrent Breus mole. Answer: Nope.
Let's take a minute here and process that. He's NEVER seen this happen twice in once person. Ever. I'm his first. And this is a guy who when you search to the medical journal "Placenta" has 142 published articles to his name. He runs a placental clinic where he's seen thousands of pregnant women over his career. And I'm his first recurrent Breus mole.
Holy fuck.
Which brings him to the conclusion that it is in fact, genetic in origin. As he says, most diseases do have a genetic component and he and his lab buddies *think* they may know the gene responsible. It's called something like WINT2 (we didn't write it down, now I wish I had). Basically what he's offering us, is that at the time of delivery if the Bio Bank personnel comes and takes a chunk of my placenta, they may be able to tell whether A) this gene is present or absent within the placenta's tissues and B) if it's present, then is it actually 'turned on' and doing it's job. We were all agreeable to this plan. As he said, it means that if we decide to go for a 'next time', they might be able, through CVS screening around 11 weeks to tell us if this gene is doing it's job, giving us a better indicator as to whether I would (for the THIRD TIME???!!!) develop a Breus mole or not. I didn't ask him about pre-implantation diagnosis, but if we were able to detect this gene, then I wonder if we could do IVF and avoid a doomed pregnancy entirely? It would be something I'd definitely consider.
Then I asked whether my pPROM is directly related to the Breus mole, because really that's our biggest concern right now. He said that a lot of placental conditions can be associated with ruptured membranes. If the placenta's not functioning or forming correctly you often get bleeding and that can be a big cause of ruptured membranes. I did bring to his attention that I've had very little bleeding with this pregnancy so far, and I did have some 'weird' feelings in my cervix way back weeks 14-17 which could (?) have been my cervix funnelling or otherwise not working right. He agreed with me that I could have a secondary incompetent cervix and that the ruptured membranes might be in addition to the Breus mole and not a direct cause. On one hand I'm somewhat gratified to hear this (I wanted to yell, I KNEW IT!!!), but on the other "shit, another problem we might have to face again in the future, even WITH a perfectly normal placenta".
The plan now is to meet with the Bio Bank people and for them to get consent to take a chunk of my placenta when I deliver (Go right ahead, hack away at it. It's not like it's doing me or Acorn any good now). I'm a little nervous about delaying this meeting until our next appointment (May 3rd) because things won't be in place to collect the sample if I go into labour before then. The Bio Bank people have someone on call 24/7, but I've since learned via their website they need to collect the placenta sample within 30 minutes (!!!) of delivery. I can tell you, no medical personnel involved when I delivered Aidan was worried about placenta sampling at 30 minutes post delivery...they were worried about my tanking blood pressure, starting an IV and giving me antibiotics. You know, keeping me alive. I might e-mail Dr. K. about this, (despite his prior uninformative and less than helpful responses via e-mail) because it's bothering me a lot. I want this in place NOW...not almost 2 weeks from now.
Anyway, after our discussion with Dr. K. I met with Dr. S. He agreed that I should continue seeing Dr. K. as he's the placental specialist and has more experience with placental matters. We also asked that if we were to get pregnant again, would it be possible to see Dr. K. early in the pregnancy until the placenta is confirmed to be working well, and then switch to him, to more closely monitor my heart. He felt this was a reasonable plan and I'm glad. I like Dr. K. better and I would feel more comfortable with him reviewing me earlier 'next time'.
Then I had my ECHO. At least we can check that test off the list.
It happened after the ECHO tech left and I was getting dressed, ready to leave. I stood up.
And GUSHED fluid. Like a ton. It felt like a full cup's worth. Soaked my pad, my underwear and the front of my pants. If my life was a TV show and I was 37 weeks (which I would be cuz no one ever has a preemie or a dead baby on TV) they would have done a funny montage with me in a wheelchair being pushed to the hospital, me yelling at my husband how "this is all your fault", me labouring with all the blue draping around me, and then cut to shot of healthy infant. Yeah!
Instead, I started to whimper and cry, trying to mop up my pants in the ultrasound room. There it goes. All that fluid Acorn and I worked so hard to build up. The fluid that the doctor's are considering my 'one saving grace'. The one thing that was 'better' than my pregnancy with Aidan. All gone in a matter of seconds. Can I build it back up? Who the hell knows.
Brian hurried me to the washroom where I cleaned up as best I could and then, without seeing anyone else we left. I couldn't take anymore. It was my dead son's birthday, my current baby is in trouble, fluid is gushing out, I can't stop it and all I wanted to do was go home and go to sleep. So I did. But first, through my tears, I ate a cupcake in honour of Aidan. It was his day and I had to do something for him.
I'm feeling less hopeful. Maybe I'll seal over a bit and build up more fluid, but I'm still at risk of infection and my cervix is shortening, not a good sign. And my baby is measuring further and further behind despite getting good blood flow. Maybe it's measurement error, maybe it's not. Maybe it means something else is wrong, maybe not, but it's not a good sign. My placenta is getting thicker and thicker by the week. It's still getting good blood flow to the baby...but who knows how long that will last? Plus with all the clots building up, will the placenta start to detach anytime soon? Abruptions are deadly for baby and sometimes for moms too. And if I go into labour in the same way I did last time, I don't know if the Bio Bank people will be in time to collect the samples. I NEED to know if there is a way to avoid a 'next time'. It would heal my heart somewhat to know there IS a cause and it CAN be avoided. That it's not inevitable. That I might be able to have a normal placenta and a healthy, full term, baby (hell, I'd take a healthier placenta and a slightly premature but healthy baby).
Because honestly, I don't think Acorn is going to be that baby. I think too much is stacked against him.
Thank you again to everyone who sent pictures and messages for Aidan and us. They were all beautiful and so heartfelt. Definitely the highlight of my day.
Thursday, April 21, 2011
My Aidan
One year ago today I sat holding my son in my arms. He was perfect in every way, just small. And dead. Whereas hours earlier he was alive in my belly. It seemed unreal that it could be 'over'. All the weeks of hoping and wishing for 'things to be okay'...ending in 5 hours of labour, 2 pushes and a grand total of 54 minutes of life. How did that end up being my life? How did it end up being his? How was I going to go on from that point? My son was dead. MY son was dead. My SON was dead.
Over the past year that fact has become more ingrained in me. More a part of me. It doesn't feel foreign anymore to say "Oh, yes, my son Aidan died at 54 minutes of age". Or "yes, we lost a baby" or "Our first child died". It doesn't crush me the way it used to. The edges have been worn smooth. I don't go a day (an hour?) without thinking about him, but I do go days, even weeks, without crying. I did what I could this year to 'move on' from his death. Both my husband and I did. We got back out in the world. I got a new job, met new people. We went to movies and out for dinner. We hung out with friends. We went to family gatherings. We did it because what else were we going to do? We couldn't help Aidan anymore, but we could help ourselves. They were all hard things to do at first, but in the end we often felt better for going than not.
I guess what I would like to say to people is: I'm okay, Brian's okay. But it is not okay that Aidan died. That is never going to be okay. It will always hurt and I will always miss him. Miss the life we should have had, the life he should have got to live.
I miss you my little peanut. My Aidan. I love you. Happy Birthday.
Thank you to all of you out in blog land that are thinking of my boy today, or who sent me a picture, something in the mail or a kind note. It is very appreciated.
Over the past year that fact has become more ingrained in me. More a part of me. It doesn't feel foreign anymore to say "Oh, yes, my son Aidan died at 54 minutes of age". Or "yes, we lost a baby" or "Our first child died". It doesn't crush me the way it used to. The edges have been worn smooth. I don't go a day (an hour?) without thinking about him, but I do go days, even weeks, without crying. I did what I could this year to 'move on' from his death. Both my husband and I did. We got back out in the world. I got a new job, met new people. We went to movies and out for dinner. We hung out with friends. We went to family gatherings. We did it because what else were we going to do? We couldn't help Aidan anymore, but we could help ourselves. They were all hard things to do at first, but in the end we often felt better for going than not.
I guess what I would like to say to people is: I'm okay, Brian's okay. But it is not okay that Aidan died. That is never going to be okay. It will always hurt and I will always miss him. Miss the life we should have had, the life he should have got to live.
I miss you my little peanut. My Aidan. I love you. Happy Birthday.
Thank you to all of you out in blog land that are thinking of my boy today, or who sent me a picture, something in the mail or a kind note. It is very appreciated.
Sunday, April 17, 2011
Calls for help on Aidan's Day
20 weeks + 2 days, 25 days post rupture.
It's coming. It's only days away. Aidan's first 'dirthday'. I have a very hard time calling it his 'birthday', because it shouldn't be. He was due August 15th 2010. Only a very very small percentage of very lucky babies due on August 15th, could be born on April 21st and live to see any other birthdays. I 'technically' should have an 8 or 9 month old.
Instead April 21st will always be a sad/happy/bittersweet day in this household.
Up until all the stuff with my current pregnancy happened, I was actually looking forward to the day. I didn't plan on doing anything big involving family and friends as some people do ('birthday' parties, fundraisers, memorial gatherings etc), but I had hoped the day would be a special one for my husband and I to spend together. We had both booked it off work long ago. People asked me at work "are you going on a trip?" and my response was "No, that's my son's 'birthday'...and I don't want to be here on that day". I wanted the day to make a cake or cupcakes that we might eat for breakfast. I wanted to go for a walk in a local park and hopefully see some buds on the trees and flowers poking out of the ground. I wanted to maybe take some photos of things I've collected for Aidan over the last year. I wanted a day to just sit and remember my son, maybe even do something artsy or creative in his honour.
I remember thinking back sometime in February or early March "I know I'll be 20ish weeks pregnant at that time, but I don't want April 21st to have anything to do with the new baby. That's Aidan's day".
Best laid plans.
It started to unravel back when around 16 weeks pregnant I had my first placental scan. The date that they gave me for my 2nd follow up scan? April 21st at 8:45am. Initially I was going to cancel it. I didn't want to be anywhere near a hospital or doctor's office on that day. It was AIDAN'S DAY, not a day to get news about Acorn, good or bad.
But then my water broke, and the placenta is bad again and I'm having doctor's visits almost weekly, and the April 21st appointment is still scheduled. Now I can't do any of the things I planned to do for Aidan on his day. I'm not allowing myself to stand for long enough to bake cupcakes. I can't go for a long walk in the park. We will be at the doctor's office that day at 8:45 am for another placental/baby scan, then talk to Dr. K. and pick his brain about all the things I mentioned in my last post. Then it's on to Dr. S. who will look at us with his hound dog face with little hope in his eyes. Then, just for an added bonus, if I finish up with the doctors quickly enough I'll have a 45 minute long ECHO on my own heart. Then we will go home and crash in bed, tense and stressed as always after these appointments.
This is all assuming I don't go into labour before then of course, because it's always a possibility. If that's the case, then for Aidan's first 'dirthday' I'll be having another dead baby.
So, instead maybe I can ask all of you to do something for my Aidan that day, since I can't. Do something nice for someone and tell me about it. Take a picture of his name and send it to me. Have some cake in Aidan's honour (the calories don't count if you're eating it for someone else). Take a picture of something growing in your garden or any other small living creature and post it for me to see. My e-mail is fireangel117@hotmail.com.
I feel so bad that, in our lives Aidan's day won't be just about him. It feels like one more way that things haven't worked out the way I wanted. One more way I've failed him. Maybe, if I know others are thinking about him, it can still be special and meaningful. It might not be me doing those things for him, but if I know others are thinking about him, and about how much he meant in our lives, that's almost as good.
It will have to be...this year, anyway.
It's coming. It's only days away. Aidan's first 'dirthday'. I have a very hard time calling it his 'birthday', because it shouldn't be. He was due August 15th 2010. Only a very very small percentage of very lucky babies due on August 15th, could be born on April 21st and live to see any other birthdays. I 'technically' should have an 8 or 9 month old.
Instead April 21st will always be a sad/happy/bittersweet day in this household.
Up until all the stuff with my current pregnancy happened, I was actually looking forward to the day. I didn't plan on doing anything big involving family and friends as some people do ('birthday' parties, fundraisers, memorial gatherings etc), but I had hoped the day would be a special one for my husband and I to spend together. We had both booked it off work long ago. People asked me at work "are you going on a trip?" and my response was "No, that's my son's 'birthday'...and I don't want to be here on that day". I wanted the day to make a cake or cupcakes that we might eat for breakfast. I wanted to go for a walk in a local park and hopefully see some buds on the trees and flowers poking out of the ground. I wanted to maybe take some photos of things I've collected for Aidan over the last year. I wanted a day to just sit and remember my son, maybe even do something artsy or creative in his honour.
I remember thinking back sometime in February or early March "I know I'll be 20ish weeks pregnant at that time, but I don't want April 21st to have anything to do with the new baby. That's Aidan's day".
Best laid plans.
It started to unravel back when around 16 weeks pregnant I had my first placental scan. The date that they gave me for my 2nd follow up scan? April 21st at 8:45am. Initially I was going to cancel it. I didn't want to be anywhere near a hospital or doctor's office on that day. It was AIDAN'S DAY, not a day to get news about Acorn, good or bad.
But then my water broke, and the placenta is bad again and I'm having doctor's visits almost weekly, and the April 21st appointment is still scheduled. Now I can't do any of the things I planned to do for Aidan on his day. I'm not allowing myself to stand for long enough to bake cupcakes. I can't go for a long walk in the park. We will be at the doctor's office that day at 8:45 am for another placental/baby scan, then talk to Dr. K. and pick his brain about all the things I mentioned in my last post. Then it's on to Dr. S. who will look at us with his hound dog face with little hope in his eyes. Then, just for an added bonus, if I finish up with the doctors quickly enough I'll have a 45 minute long ECHO on my own heart. Then we will go home and crash in bed, tense and stressed as always after these appointments.
This is all assuming I don't go into labour before then of course, because it's always a possibility. If that's the case, then for Aidan's first 'dirthday' I'll be having another dead baby.
So, instead maybe I can ask all of you to do something for my Aidan that day, since I can't. Do something nice for someone and tell me about it. Take a picture of his name and send it to me. Have some cake in Aidan's honour (the calories don't count if you're eating it for someone else). Take a picture of something growing in your garden or any other small living creature and post it for me to see. My e-mail is fireangel117@hotmail.com.
I feel so bad that, in our lives Aidan's day won't be just about him. It feels like one more way that things haven't worked out the way I wanted. One more way I've failed him. Maybe, if I know others are thinking about him, it can still be special and meaningful. It might not be me doing those things for him, but if I know others are thinking about him, and about how much he meant in our lives, that's almost as good.
It will have to be...this year, anyway.
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