Saturday, April 30, 2011


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 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?

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?

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 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


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.

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.

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.

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

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.

Friday, April 15, 2011


20 weeks, 23 days post rupture

We bought the lap top I'm currently typing on about a week before Aidan died. I was almost 23 weeks pregnant, and we were starting to look towards 'what will happen next', including possible hospitalization. We knew I would need a lap top if I was hospitalized for any length of time, so we ordered one, even though cash flow was short at the time.

This lap top arrived 2 days after Aidan died.

We've got a lot of use out of it this year though. I'm glad we bought it, even though we didn't get to use it for its original purpose.

But wait! Not so fast! Here we are again a year later. On bed rest, scared, possibly facing hospitalization again. We were certainly correct we'd need one (how nice to be right about one thing!) This lap top is coming in handy.

So as I sit here and play my 147th game of Solitaire, I have lots of time to think. About the last couple of years of our life, about Aidan and about Acorn and what comes after. I have so many questions, so many thoughts. I'm trying not to think too far into the future, but its hard.

My main question is how and why did this happen, both to Aidan and Acorn? If it is genetic as the doctor thinks, how 'strong' of a genetic link is it? 1/2, 1/4, 1/50? Placental issues are generally more likely in boys. Therefore if this is a boy that would go along with the theory. If we had a girl would it be as likely to occur? And how sure can we be of that? Sure enough to do (expensive) IVF and pre-genetic implantation diagnosis to assure ourselves of having a (healthy?) girl. It would be worth the money if it was a (fairly) sure bet, but I don't think doctors could be sure enough to support that plan.

But if a Breus mole is a rare placental complication, with very few people (or anyone but me?), experiencing a recurrence, then how sure can we be sure it's genetic? Each baby is always genetically different. Did this baby just happen to get the exact same genes as Aidan to cause this? Maybe it's not genetic. The only known constant in both pregnancies is me. What if there is some cause originating in me? A clotting disorder we didn't test for? An autoimmune disorder attacking the placenta? Hormonal causes? Something else that we wouldn't even know to look for? Could my heart be a causal factor after all? Not many Fontan patients have had children, so what if this is somehow related to my heart in a way they haven't thought of or explained yet?

And I wonder about how many times I can do this. If Acorn doesn't make it, will my husband and I have the strength to try again? If we do, how long will it take to get pregnant again? Are there any precautions we should take 'the next time'? And if there are, why didn't they recommend them for 'this time'? Can we mentally stand the long wait through the first trimester (with all it's own inherent risks) to the second trimester where things seem to go wrong for us? And what if it happens a third time? It's almost too horrible to contemplate. But what if it's the third, (or fourth? fifth?) pregnancy that works out for us? I would never want to miss out on that out of fear and sadness. But how many children might die in the process? Is it even fair to bring them into being if they have a (sort of) fatal genetic defect?

Which brings about the question of what exactly is the (potentially) lethal aspect of this disorder? The Breus mole likely starts things off, but really it's the ruptured membranes that caused all of Aidan's problems and is the major problem affecting Acorn at this time. Aidan didn't actually die due to his placental problems. He was born alive and appropriately sized, therefore he was getting adequate blood flow right up to the end. Aidan died due to an infection I got from having ruptured membranes and associated underdeveloped lungs and prematurity. If the Breus mole had been exactly the way it was, but I had never had pPROM with Aidan, would I currently have an 8 month old? If we can't prevent the Breus mole from happening, could we at least prevent the pPROM? Or hey even 'delay' the pPROM for at least 10-12 weeks (preferrably more!) until our baby has a better shot. I'm not sure how possible that even is, since I didn't seem to have an incompetent cervix, the one (sort of) preventable cause of pPROM.

Don't get me started on what happens if Acorn makes it to the NICU. That is what I'm hoping for of course, but I want him to be there at an older gestational age, getting healthier, bigger, heavier, HOME! I'm not sure how I will react if we have a very sick, small 24 weeker. I know the complications that can result from that, how badly things can go, how much those little babies can suffer. And how difficult decision making can be for parents in those cases. Sometimes as a nurse in those situations you would wonder how parents could let their child suffer, left on a ventilator, unable to move, facing infection after infection, surgery after surgery. At what point do you say "enough is enough?" When I was a nurse, I thought I would know if it was my child when to say enough. But Brian and I haven't been able to 'throw in the towel' during either of our high risk pregnancies, so what makes us think that decision making in the NICU is going to be any easier?

As you can see, I'm having a lot of thoughts lately. It's amazing how much thinking you can do while playing Solitaire.

Officially 20 weeks

19 weeks + 6 days, 22 days post rupture

I consider tomorrow to be 20 weeks pregnant. I know when I ovulated and we have been considering every Saturday to be another week pregnant. However, my doctors have been going by my LMP, making me 20 weeks pregnant as of yesterday. (I'm half way there! Ha ha, in a perfect world).

Anyway, this is good news for four reasons.

1) I'm still pregnant (duh).

2) If the baby was born tomorrow he or she would no longer be considered a 'miscarriage' and would 'count' in the eyes of birth registration people, and medical science as an actual baby granting me the documentation to prove Acorn's existence.

3) I am now eligible for 17 weeks of maternity leave, even if the baby dies. I took all of it last time with Aidan because I was looking for a new job. I'm not sure I would take it all this time if I end up not having a baby to look after, but it is still nice to have the option.

4) Since your baby is no longer a 'miscarriage' you're taken right to L&D triage if you are in labour. This means I (hopefully) won't have to deliver in Emerg next door to an appendicitis patient or whatever.

All reasons to celebrate, I guess.

Tuesday, April 12, 2011


19 weeks + 3 days, 19 days post rupture

I think the universe hates me. Me and the people of northern Japan whose current nuclear crisis has been increased to the level of Chernobyl. Seriously, we must have done something really terrible in a past life to warrant this level of utter catastrophe and disappointment.

Kidding....well okay not really.

Late yesterday afternoon, around dinner time, I started leaking amniotic fluid again. I had been somewhat unsure over the prior week as to whether I was still leaking (was it coming out in small drips when I went to the washroom?), but I discovered last night that 'No, I can definitely tell when I'm leaking'. I figure I lost about 20 ml-30 mls or so...enough so that it's more difficult to feel the baby move today. My mental state (figuratively) joined my amniotic fluid in the toilet. Honestly, when I feel that fluid come out, it feels as disturbing as if I'm trying to hold in the blood of a gunshot victim, or am at the wheel of a plane going down. My mind starts screaming "WARNING! WARNING! IMPENDING DOOM AHEAD! DO SOMETHING!!!" It feels like I'm leaking away my child's life in slow small drips. It is fucking awful.

And OF COURSE, it had to occur the night before my fetal anatomy scan. You know, the scan that might tell us if we are having a boy or a girl, and the scan that's important to see if in fact our child is developing its parts correctly. Made more difficult or close to impossible WITHOUT FLUID.

We barely slept all night, but managed to make it right on time this morning for 9:45am's scan. It lasted two hours and 3 different people wanted to take a go, including the tech who did most of the measurements, the radiologist who was using me as a teaching tool, and a fellow who was practicing her ability to get uterine blood flow measurements. Even with all that, the report we got afterwards stated that the heart, spine, kidneys and feet need to be 'redone at a later date due to poor visualization due to lack of fluid' (assuming that I even have more fluid at that later date, oh and of course, that I'm still pregnant).

We didn't bother going to see my OB afterwards. We just dropped off the report. He's not going to say anything different and I couldn't take anymore pitying looks today. I was supposed to get an ECHO of my own heart today as well, but we missed our 11:15 appointment time and they were too busy to fit me in later.

Good news from the report is that baby's parts they could see appear normal. There was some fluid left, my amniotic fluid index (AFI) is 5.7 cm, lower than last week's 7.8 cm, but at least not zero. Aidan consistently had 'anhydramnious' meaning that there were no pockets bigger than 1 cm, and 'more than that' is needed for lung development, although I'm not sure how much more. Happily, we also got quite a good profile shot. There was just enough fluid near baby's head to see the outline, so at least it's something for the baby book. Acorn will also remain Acorn for now, as no boy or girl parts could be visualized.

Bad news is, of course, everything else. Placenta looks bad. Still leaking. Cervix length is only 2.7 cm (down from 3.0 cm last Thursday, this makes me VERY nervous). The baby is also measuring behind, so although I'm 'by dates' in my 19th week, the measurements only put us somewhere in the 18th.

It was also disappointing that the e-mail I sent to the placenta specialist Dr. K. was returned with "please make an appointment to discuss". Do doctor's realize how difficult that is? It means another day off work for my husband, another $20 in parking, more moving around, possibly causing more leaking for me, and it's days away until I could see him again and I wanted to ask a few questions about delivery which could, ya know, happen at any moment.

Oh, and just to cap off my day, I saw a woman in the clinic waiting room who I used to work with in the NICU. She's pregnant again with her second. I'm not sure she saw me, but I'm sure she heard when the ultrasound clinic desk yelled out both my first and last name. If she did, it will be all around the NICU soon that "hey, Emily who used to work here is pregnant again!" If I start getting facebook inquiries of " are things?", I might just need to punch something.

Today's Bonus Question: Do any pPROM moms know what the 'minimal' fluid index needed for lung development is? 50 points to anyone who knows!

Monday, April 11, 2011


19 weeks + 2 days, 18 days post rupture

It's Monday. My husband went back to work today. He's been off since I ruptured. He took all his sick days and a whole week of vacation to sit around with me, make me food and do housework. Not the most fun vacation in the world.

I know he has to go back. There is no way we can survive on my EI income alone (which may start to arrive near the end of the month?) and I don't want him using up any more vacation time. Who knows what we are to face in the next few days/weeks/months? He got 2 bereavement days after Aidan died and then took a week off. If a death occurs again, I suppose he'll do something similar and I want him to have the time off to grieve. I wish we could send a message to family and friends that read something like "send prayers and if you can, money". It would really help.

But being alone for any amount of time during the day makes me nervous. I liked having him home and ready to rush me to the hospital at a moments notice. This week, I have a family member or friend coming to visit/take care of me each day, but it's not the same as having Brian around. I wish we could afford for him to just be home with me.

I've never actually written on my blog about the events of Aidan's delivery. I can honestly say, it was terrifying medical event (and I've had open heart surgery) and it wasn't because I knew my baby was about to die. From the moment the pain started, to the rush to the hospital, to the vomiting, drop in blood pressure, delivery without pain meds (which I had previously been told I would need to prevent heart failure), no IV started or any medical personnel around that knew me. I honestly thought I might die. I'm not eager to repeat the process, especially without Brian around.

Now every little twitch or cramp has me on edge. Is this it? Should I go to the hospital? Should I call an ambulance this time? They won't take me to the hospital I'm 'suppose' to deliver at (the one trained to handle high risk pregnancies & deliveries), they will take me to my local hospital. But isn't it better to be at a hospital in general, where I can get antibiotics and fluids, pain meds and oxygen? Or should we risk the drive downtown to the 'high risk hospital' where I (might?) will get 'better' care.

I'm only just over 19 weeks. I still have over a month to go before they would even CONSIDER admitting me to the hospital. The whole process is just so scary. I wish someone could just knock me out and wake me up when the whole ordeal is over by either handing me my beautiful dead baby or my kicking, screaming live one, also a beautiful site. I just don't want to have to cope with what comes first.

For you pPROM moms, how quick was the time from when you started to notice 'something was happening' to the time that you delivered? With Aidan it was probably 5 hours. I don't know if I will have more or less time this time around.

Saturday, April 9, 2011

Pity party

19 weeks, 16 days post rupture.

You know what I'm really sick of? Pity. Depressing news. Sad events. My life not going the way I planned.

Two years ago, on April 22nd 2009, Brian and I and another couple (our two best friends) got on a plane for our dream vacation to Europe. We went to Amsterdam, Paris, Florence and Rome. We were gone for over two weeks. We saw amazing things, had a great adventure and returned home full of hope for our futures. You see both Brian and I, and this other couple were using our Europe vacation as sort of the 'last hurrah' before we both started families. Our friends, as it turns out, got pregnant on their first try. She had a healthy pregnancy, a midwife delivery and a beautiful baby girl in February 2010, almost 9 months to the day that we got home from Europe. That baby girl is 14 months old now.

It took Brian and I a little longer, and we were definitely starting to stress about it, but in early December 2009 we finally did it. We were pregnant! Our baby was due August 15th 2010. My friend's baby would be 6 months old at the time, but hey, our kids would be in the same grade and could play together as they got older. But my pregnancy wasn't a healthy one. I bled. A lot. I was on bed rest for months. Eventually it was discovered I had no fluid. The placenta was abnormal. Infection set in and I delivered our Aidan on April 21st 2010.

A year to the day that we left for Europe was the last time I held Aidan in my arms.

And things moved on. My friend's baby got older. My cousin's 2nd wife had his 4th child. Matt Damon's wife had his 3rd baby girl. The Duggar's brought home their 18th (19th? I've lost track) child, who although premature, lived.

And then I was pregnant again. New hope. New life. Fear, but also excitement that maybe, just maybe this time it would end happily. I would be healthy. I would carry this baby until he or she could carry on without me. I would make a safe home for 9 months. I wouldn't fail. There might be scares, or minor upsets, but come on, it couldn't be like last time. That was a disaster that couldn't possibly repeat itself. Like lightening hitting you twice, when now you stayed indoors at the first sign of rain.

But here we are again. On bed rest, minimal fluid. Wonky placenta. Guarded outcome.

And almost two years from the day that I jetted off to Europe, with a whole world of possibilities at my feet, I can not believe we've ended up here. How did we get here? Things weren't suppose to be this way. Good, happy things were supposed to happen. I'm not saying there weren't suppose to be challenges, or hard times...but not this, no never this.

Brian and I are tired of being the couple people feel sorry for. The couple who has it rough. The couple whose dreams are shattered and hopes dashed. It's almost unbearable to get e-mails and calls from friends and family laced with pity and sadness. Poor Emily and Brian. I just can't imagine what they're going through. They are so strong. We're praying/keeping our fingers crossed/thinking of you/hoping good things come your way etc.

How much longer can we keep hitting the opposite of the jackpot? Was the information that we got on Thursday, that the baby is getting good blood flow and has at least a little bit of fluid an indicator of hope and good things to come? Could, after two years, we finally be on the winning team? Will Acorn beat the odds, and come home a healthy, normal baby to sleep in the bed room I so desperately want to ready for him? Or will the blood and fluid just be another red herring? Something we will look back on wistfully and think "if only it could have stayed that way?"

After two years, I'm afraid to hope at all.

Addendum: I've got 5 comments on this post so far, and I just wanted to make it clear, that I'm not in anyway saying that I don't appreciate that people are sorry for our past and current situation. Or that I don't want people to call/write/e-mail with their hopeful thoughts for us. It's that I don't want to NEED pity or hopeful wishes. I just want things to go RIGHT for a change. If people don't need to think about me or my family at all because we're doing just great, that would suit me just fine. Hey even a little bit of jealousy at our good fortune never hurts! Just kidding...well, actually no, not really. And I promise, I'll really really appreciate just the miracle of normalcy.

Are you tired of the pity party surrounding your life? What would make it better? How do you continue to feel good about yourself in the wake of so much loss?

Friday, April 8, 2011

Hope on a Rope

18 weeks + 6 days, 15 days post rupture (it's after midnight so I'm being technical here).

An all day marathon doctor's appointment today. Much of what was waiting. Saw Dr. K, the placenta specialist and Dr. S. my high risk OB. On to the update...

Dr. K. came into the ultrasound room after the tech had finished her bit. He confirmed that, once again, my placenta has developed a condition called Breus mole, just like Aidan's. What this means is that my placenta has a layered look, with healthy functioning tissue as the bottom layer closest to the uterus wall, but with tissue that is filled with clots the closer you go to the fetal surface. These clots make the placenta thicker than normal. However, some good news is that, just like with Aidan, blood flow to the placenta from me is normal as is the flow through the cord, meaning that there is capacity for the baby to grow.

I asked Dr. K. whether heparin in future pregnancies would be advised. His feeling was that it wouldn't help, and might actually be detrimental because this seems to be a 'too much bleeding' condition rather than a 'too much clotting or poor blood flow' condition (like people with pre-eclampsia or thrombophilias). He feels this condition is inherent within my placenta and is likely genetic in origin since it has a) happened twice and b) I show no signs of any condition which could cause this. He feels it might particularly be x-linked, meaning that boys are more affected (increasing my supposition that this baby is a boy). Boys tend to be more highly affected by placental abnormalities and thus a girl may avoid it or at least have a less severe case. This would be good news for any future girls we may have. Of course, nothing is for sure, and no one can guarantee this won't happen in every pregnancy I have.

We then moved on to fluid. It turns out, I actually have some. My AFI is 7.8 for those of you who care. In Dr. S.'s opinion, if I could maintain that amount, the baby's lungs would develop normally. (Way to put the pressure on Dr. S.) This is all supposing I can keep fluid in, don't get an infection, bleed heavily indicating an abruption or otherwise go into premature labour. Dr. S. also took me off antibiotics. He doesn't want to leave me on them long term as you risk other, nastier bugs taking up residence. This makes me VERY nervous for my heart, but I see his point.

As you can imagine, this whole day is very stressful. I come home exhausted, with my heart racing, my blood pressure probably elevated, my body cold from being tense for so long, and jittery from not eating, crying, and sitting for hours (we waited almost 3 hours from the end of ultrasound to see Dr. S. VERY unimpressive).

I come home with some pieces of good news, but ultimately I'm almost more nervous. I feel MORE responsible for keeping Acorn and myself healthy, when ultimately I intellectually know there is little I can do. I continue to drink a lot, move around a limited amount, take my acidophilous pills to replenish good bacteria and pray I've sealed enough to prevent infection or leakage. I'm also hoping that the placenta doesn't get any worse, and that it doesn't start to bleed, impede blood flow or otherwise compromise baby's health. We are also still hoping that there is nothing physically wrong with baby, since with low fluid volumes it's difficult to see. Oh, and of course, it would be nice if my own health is uncompromised with all of this. Dr. S. is ever concerned about my heart, which still could be affected by pregnancy related complications.

It's a lot to keep up hope and positivity while walking this high wire tight rope. I'm so afraid I'm going to fall.

Wednesday, April 6, 2011

Planning for a dead baby, hoping for a live one

18 weeks 4 days, 13 days post rupture.

So preparations are coming along for a possible second dead baby. By making these preparations don't think that I'm giving up on Acorn, because I'm not. But I tend to be a realistic person and like to plan for things a head of time. Even if it means planning for a dead baby on one hand, while very much hoping for a live one on the other.

Blankets: I sent my husband on a mission to find some cute, gender neutral baby blankets for holding the baby after he or she is born. He did an awesome job. Even managed to find a cotton baby blanket with tiny little acorns all over it! I know this was hard for him as he ended up having to go to Babies R Us. Babies R Us possibly being the second to last place a possible 2nd time around dead baby dad wants to go (the worst being the maternity ward at the hospital where all the healthy babies are). We also got Acorn an 'Angel Dear' blankie from Chapters. After Aidan was born, we realized we hadn't brought a toy or a blanket to the hospital for him, so Brian ran downstairs and picked up the 'Dark Monkey' from the bookstore. I wanted to ensure Acorn would have one too, so Brian got him the 'Ducky'. Unfortunately I only found the Angel Dear website after picking up the Ducky, and I think I would have much preferred the 'Owl' (get it, Owl, Acorn, trees). Oh well. Do ducks live in trees? Something tells me they don't.

Funeral Homes: Yes, I'm looking into funeral homes. Sad but true. I wasn't entirely happy with the funeral home that we dealt with last time. See this post and this post for that debacle. So, I've found a funeral home, that while much further from our house, will cost a lot less and has agreed to pick up the baby's body and arrange for cremation even if he or she is born before 20 weeks. That's a relief.

Birth certificates: I e-mailed my colleague Lori who is the bereavement coordinator where I used to work. I was so hoping to soon be shooting her an e-mail saying "guess what??! I'm pregnant again!!", but the e-mail I actually got to write her had a much different tone. "Guess what? I'm pregnant again and possibly in need of your services". She was able to confirm for me that yes indeed, there is no official certificate at all for a birth prior to 20 weeks. If I make it to 20 weeks and the baby is stillborn I will get a 'stillbirth' certificate which substitutes for a birth and death certificate, which we had for Aidan since he was born alive and lived for 54 minutes. I don't know why this matters so much to me, to have a birth and death certificate. I suppose it pulls at my genealogist heart strings that my baby, who was very much wanted and loved, and will be named, could be no more than a footnote in my medical records. Inaccessible to the public. I want Acorn to be able to be looked up on a birth register in 100 years. I want him to count in a legal, public sense.

Pictures: Lori also told me that NILMDTS doesn't usually do photos prior to 22 weeks gestation, and even that is dependant on the baby's condition. But she urged me to contact them in any event, just in case someone would be willing to help us out. We have also charged our own camera and plan to ensure it is ready to go, just in case. If I could have just ONE perfect picture, like the photo above of Aidan, then I will be happy.

Foot/Hand moulds: I'm really hoping the hospital will be able to help us out with this one, but I'm leaving nothing to chance this time. I love Aidan's foot moulds and would like ones for Acorn. I was planning to do it even if Acorn was born big and healthy at term, just to show the size difference (or now possibly similarity). I'm hoping Lori will put together a package of mould making supplies for me and that way we will be able to make our own, just in case the NICU nurses aren't available to do them for me. I'm also really hopeful I'm in good enough shape physically to do this after the birth. I was so tired and sleep deprived after Aidan was born. If not maybe I'll have to teach Brian how to do it or have him page Lori to see if she can come and do it if it's a weekday (she's VERY good at them).

Names: This is a hard one. We have decided that yes, if Acorn is a he, and he is born somewhat healthy or at least with a possibility of being so, then we will use the boy's name I really wanted, that also belongs to a distant cousin of mine. If however, the baby is born dead, or before 24 weeks, or later but with a poor prognosis...then we will choose a 'dead baby' name that belongs to no one in the family and is distinctly the baby's. What this is going to be is still (sort of) up for debate. There is a name that I would REALLY like to use, that I feel is appropriate and goes nicely with Aidan, but my husband isn't really fond of it (although I've secretly started calling the baby that in my head). There is another name that we both like, and could probably agree on, but I'm not as fond of the meaning and to me, for a baby that isn't going to live, the meaning is important. So, this might still be up for debate. We also haven't settled on a middle name for a boy at all... Girl name however is done and will be the name we originally wanted. Although I have recently found a pretty girl name that actually means 'oak tree' (Ayla for anyone who cares) which I thought was kind of neat.

So there you have it. Plans for a dead baby while very much hoping for a live one.

Anything anyone can think of to add?

Sunday, April 3, 2011

Thoughts from the bed

18 weeks + 1 day. 10 days post rupture.

I'm starting to meld into bed rest. The first few days my legs and back were so sore from laying down for so long. Now my body seems to have given in and things don't hurt so much anymore. I guess that's a good thing?

One of the worst things about bed rest is how much time it gives you to sit and think. And hey, if you're on bed rest you likely have shitty circumstances to ponder. These are a few of the (possibly crazy) things that have been running through my head.

1. It bothers me that if this pregnancy results in another dead baby, that it will somehow compromise Aidan's position as my 'one and only' dead child. I feel possessive of that title for him. He did not get a chance to express his personality or have any likes or dislikes. His specialness resided in the fact that he was my only child and that he was dead. If everything had gone as planned and Acorn was a normal full term healthy baby, then he would get the title of 'one and only' living child. Able to grow and develop a personality of his own. He wouldn't be my 'only child', but he'd be the only child I'd get to know. Somehow the two of them sharing the title of "Emily & Brian's dead children" seems to lump them together too much. If Aidan could remain as our 'dead child' and Acorn could remain as our 'living child' it somehow preserves each of their individuality, each of their specialness. It makes me sad to think of others not remembering them individually like I will. I feel that if they are on the 'same side of the veil' as it were, their relative importance in our lives will be lost.

2. We have obviously been speaking a lot more with friends and family over the past week. People want to know what happened and provide support, which I completely understand and appreciate. But as people are wont to do in the course of conversation, they will occasionally mention things involving 'the future'. Not the 'distant future', more like 'this summer', or 'at so & so's birthday'. For example, my brother mentioned going to the cottage this summer and how it would be nice to spend time with us up there. My mother talked about a restaurant that she recently visited and how we should go there sometime. My brother-in-law & sister-in-law talked about an annual out of town concert we could go to again this year. While I appreciate that this is what normal people do, talk about the future, make plans etc: It rips my heart out every single time. Because I did that already. After Aidan died everything I did from helping my friend move, to going to the cottage, to getting a new job, to planning to get pregnant again, was because AIDAN WASN'T HERE. I want to scream at the unfairness of possibly having to pick up the pieces of my life again and pretend that I'm enjoying what I'm doing instead of spending every single day thinking "I'm only doing this because I have no baby to look after". Maybe other people are better at doing this, distracting themselves with plans so as to avoid focusing on what was lost...but I'm not one of them.

3. Before we got pregnant the first time we had a boy and a girl name picked out. When we found out Aidan was not likely to survive, I was sad that one of those names, a name I had imagined belonging to a living child, would now belong to a dead one and I would rarely get to say it out loud. I wrote about it here last summer. So now, having received the same news about this pregnancy, we have a similar decision to make. If the baby is a girl, a fact which I doubt, she will get the name we had originally picked out for a girl. We gave Aidan the name we wanted for a boy, so we could not deny our first daughter her rightful name. However, boy names are trickier this time around because before my water broke, we hadn't agreed on a front runner. The name that I wanted to use, my husband admitted he was going to give in on...but now I'm not sure I want to use it. It's a distant relative's name, and while that wouldn't have mattered if I had a living breathing child around that I was calling that name every day, it will bother me to hear it referred to in family conversation regarding a person that is not my child. So, we should probably pick a name that no one, on any side of the family has ever used. But....what if the baby lives? Then I would want to go back and use the name I originally wanted. So do we pick two names? A name for a dead child and a name for a living child? It seems kind of unfair to Acorn. But then nothing about this situation is fair.

Well that killed a few hours, writing about my crazy thoughts. Exercising my fingers at least.

Feel free to leave a comment about anything above.

Friday, April 1, 2011

If only...

I'm sad tonight. It's Friday. If this were a normal Friday maybe my husband and I would be out at the movies or out for dinner. Maybe we'd be hanging with friends having fun. Maybe if things were normal we'd be planning to do some 'advance' baby looking tomorrow. Not with the intent to buy anything of course, but just, you know, for fun.

But things aren't normal. Things are shit.

I've been trying to be good and remain laying down as much as possible, but I continue to leak fluid and mucous, so I'm definitely not counting on re-sealing anytime soon. We've listened on the doppler a few times, so we know the baby's heart beat is still it's normal 150-160s range. However, it makes me sick thinking about how just over a week ago, I was starting to feel some pretty obvious baby flutters pretty frequently...and now I feel a lot less. Just like with Aidan. Baby has no room, baby cannot move. I'm afraid all the time that I'm crushing him/her.

One thing that has made me really angry the last few days was that I do not know Acorn' sex. At our 'placenta' ultrasound at 16 weeks, we specifically asked the tech if she could tell us if it was a boy or a girl. She looked for about 5 seconds and then said "Um...might be too early to say, cord is kind of in the way...and I'm not really comfortable saying". AND NOW WE LIKELY WON'T KNOW UNTIL THE BABY IS BORN. If she had just taken a few more seconds, or if we had pushed a little harder, I might be able to better prepare for what might (will?) happen. I want to name the baby instead of just referring to him/her as Acorn. I want to be able to buy a gender specific blanket to wrap him or her in that belongs just to us. I want to have something ready with his or her name on it, but I can't. If I could go back and do one thing, it would be to continue taking my progesterone longer (not that it would have helped anything, but just in case), and I would have pushed to have them tell me the sex. When you might lose your baby, the sex is not just an 'insignificant detail'. It matters very much.

I'm just angry and sad and disappointed that we are here again. No one knows what to say, again. And I don't have any answers. I almost feel embarrassed that this has occurred again. Sort of like if you fail your drivers test. Once, everyone understands, but any more than that and people start looking at you funny. Like "gee, what the hell is wrong with you? How could you screw up this natural, normal thing, not only once, but TWICE?" My brother was funny when he joked that the only way things could have been worse at this point was if, when my membranes ruptured, I had been in Japan, when the earthquake hit, and I could have been on a tour of their Nuclear Power plants. Seriously.

I just wanted a normal, average pregnancy. I would take the morning sickness, the tiredness, the added pounds and back pain. I know I'm a heart patient and things might have got a little more dicey to towards the end, but in the couple weeks before I ruptured I was physically feeling pretty good. The doctors thought so too. I was up, I was active. I was feeling healthy and not so tired. Now I feel sore and achy from lying down, and I'm worried every day that I'll get an infection, or bleed, or that the baby's heart will stop. And those are just my short term worries. Long term ones are worse.

I wake up every morning wishing I was someone else, somewhere else. It takes all the strength I have just to open my eyes. I feel all alone and there is no one coming to the rescue.

I can no longer remember a time when I was not yearning for something I could not have.