Sunday, May 29, 2011


26 weeks + 1 day, 9 weeks + 3 days post rupture, day 19 at my parent's place.

My parents live in an 80 year old house on a busy street in the centre of our city. It's an awesome neighbourhood, close to everything. Their house is also a duplex, so they rent the upstairs in order to help pay the mortgage. Their old tenants were already living there when my parents bought the place, so my parents never had to advertise for new renters. Thankfully those tenants were wonderful and generally pretty quiet. But, they were a young couple and recently bought their own house. They moved out late February so the upstairs apartment has been empty since then.

All through March and into April my parents worked on updating the upstairs apartment. It was empty and they wanted to 'spruce it up' a bit so they could rent it for more money. They did a lovely job and their new tenants are moving in this weekend.

The new tenants are two young women. They have jobs, cars, are upwardly mobile, and want to live in a part of the city that is great for getting to fun things like clubs, shopping, parks etc.

I watched out the window today as they and their friends and their fathers helped unload stuff from their cars.

They and their friends are bouncing around in tank tops, flip flops and shorts, hauling boxes and carrying stuff up the stairs. I hear them moving around from my bedroom down below. They are excited to be moving into their 'first place!!!'.

Both women are 27.

I'm 28.

I'm on my second high risk pregnancy in just over a year. I am confined to a few rooms in my parent's home. Any muscle tone I had is gone. I have to track down 'babysitters' for myself this week (my mother-in-law? my brother? my best friend? Can you come stay with me?) My husband has to help me shower. I haven't had a hair cut, worn contacts, or put on makeup in months. Haven't had a dental check up in over a year because my pregnancy went to hell just before I was to go, and yesterday I plucked my eyebrows for the first time in weeks.

I wear the ashes of my dead child in a pendant around my neck.

I feel ancient.

By the way, recently my 'blog I follow' list changed itself and now shows photos embedded in the post updates. Just wondering if anyone knows how to get rid of those? Some of you have recently had 'rainbow' babies and while I'm genuinely happy for you, I'm just not up for their general alive-ness assaulting my eyes whenever I sign on to blogger. Thanks to anyone who can help me out with this.

Friday, May 27, 2011

A philosophical discussion

25 weeks + 6 days, 9 weeks + 1 day post rupture, day 17 at my parent's house

Wednesday I called my insurance company who finally put me in touch with a nursing agency who could provide in-home nursing care. The nurse from the company called to ask about 'my needs' and to set up an 'in-home assessment'. I told this nurse all my medical info, and what I was hoping to get from their agency. The case coordinator is coming Monday to 'assess' me and then make recommendations to the insurance company, who will then decide whether or not to pay for me to have a nurse. I could be wrong, but I got the distinct impression on the phone that they have never had a case like mine, and that they don't really 'do' any type of maternity care.

It will be a big problem if they refuse to allow me to have a nurse for 'daytime' monitoring. My family is maxed out in terms of time off and I'm too afraid to be alone in case something happens. If the private care doesn't work out we may have a decision to make next week. If I'm still pregnant and I have no one to look after me, do I go back to hospital? And if so, do we suck it up and pay the $100 a DAY to get a private room to save my sanity?


*Deep breaths*

When I told my mom about my discussion with the home care nurse on Wednesday night the discussion spiraled into an all out cry-fest with the two of us balling our eyes out. She is afraid to see me back in hospital because she saw how terribly it affected me when I was there a few weeks ago. She also feels so badly she can't just stay home and look after me. I'm her kid and she wants to protect me and keep me safe. It's making her very stressed and anxious that she can't do it to her own satisfaction.

Then I was crying because I am so angry at fate who has us here again. I am angry at the insurance company and the medical system who would hospitalize me in that hot bed of infection and mental anguish, but who makes me jump through hoops in order to get cheaper care at home. I'm angry at my doctor who keeps saying how little hope there is of a 'good outcome' which just frustrates the hell out of me, when we've come this far. I see now why it was so important to the parents in the NICU if I as the nurse showed hope in their baby's outcome. Someone else 'in charge' believing it's possible means SO MUCH. I am angry that I'm so challenged in my every day activities. My family is doing everything for me. Do you know how crappy it is not to be able to get up to open a window if it's hot? Not be able to pick up anything you dropped on the floor? Or make yourself a snack if you're hungry? I live in constant fear and sometimes it's draining and tiring and makes me sad and other times it just makes me angry. I often wonder if it's worth it...but I can't skip ahead and I can't go back. I'm stuck.

Then my mom and I got into the discussion on hope and how I don't have any. She's crying, I'm crying. My dad's standing around looking lost and finally went to bed just to get away from us. It was awful.

That night as I was lying in bed, wiping away the tears, I came to a philosophical conclusion. In order to test my own conclusion the next day, I ran it by my husband. I was amazed, and pleased, that he understood exactly what I was saying.

Here it is:

I do not have hope. I do not want hope. Hope is too fragile. Too breakable. We've had our 'hopes' dashed too many times in the last two years to trust in hope. What will be will be. Hope will not save this baby either way. Hope did not save Aidan. Hope can die.

Our reason for continuing is something much better, much easier. Our reason to keep going, keep fighting, is love. We love Acorn and that will not end if he or she dies. Love cannot be broken or crushed the way hope can. We endure this tedious, scary bed rest, and possible hospital stay and (maybe?) an NICU stay not out of hope, but out of love. Love is what Acorn needs. Our love for Aidan did not end with his death, but hope for him did. Love for Acorn will continue no matter the outcome and that is a much easier thing to live with, and trust in, day in and day out, while we wait for whatever happens next.

So the Beatles got it right when they said, "All You Need Is Love".

Does this only make sense to my husband and I? Thoughts?

Tuesday, May 24, 2011

On Hope

25 weeks + 3 days, 8 weeks + 5 days post rupture, day 14 at my parent's house.

Tomorrow my mom goes back to work. Since we don't have home care up and running yet, Brian is taking the day off to spend with me at my parent's house. He's going to do some carpentry work around their 80 year old house for them as a bit of a thank you for taking such good care of me, feeding us and generally making themselves available and putting up with all the craziness that has been the last few days, no wait, weeks, no wait, MONTHS of my pregnancy. Seriously, I don't know what we would have done so far without them. Maybe I'd be wasting away in the hospital. Maybe I'd still be anxious at home. Maybe we would have tried to get home care sooner. Maybe Brian would have had to take a leave of absence from work and we'd have gone into debt. I don't know. It's certainly nice to be able to count on family.

But, more than anything I wish I didn't need any of it. I hate feeling so dependant on people, even people I care about. I would do it for them of course, but heck, I'm 28 years old and I need more help than my 85 year old grandmother who is basically blind, deaf and has Alzheimer's. Seriously, it's pathetic.

I just wish I could have had a normal pregnancy. Just normal. Like millions of other women do. Like people have been having for generations. I feel so defective and abnormal. I felt this way after Aidan's pregnancy and this second pregnancy has just confirmed it. My (our?) genes are defective and for some crazy unknown reason have resulted in a terrible RARE placental defect that (probably?) caused pPROM before viability, TWICE in a row. A circumstance unheard of in medical literature. It's gob smackingly awful.

Things I would have really liked to do during this pregnancy include just totally normal stuff. I didn't think I'd travel or go too far from home. I wasn't even planning on going to the cottage this summer, just in case I needed to be close to medical care. But I at least thought I'd get to sleep in my own bed until my baby was due to be born, instead of living like an invalid in my parent's spare room or a hospital bed. I didn't think I'd work right up until the end of the pregnancy as I didn't want to put that much stress on my heart. But I was hoping to make it until at least the 3rd trimester. I even banked all my vacation since I'd started working last year after Aidan died, just in case I got pregnant again and needed a 'buffer' before maternity leave. I could have taken 4 to 5 weeks paid vacation. Imagine how nice that would have been. 30 weeks-ish, healthy but off work, summertime, able to do nesting, cleaning, attend 'routine' doctor's appointments by myself, relax and just wait for the baby to arrive. Heaven.

Due to low fluid we've never been able to find out the sex, which I would have really liked so I could paint our spare room. I realize even in a normal pregnancy sometimes you don't get to find out, but I could have at least picked out some neutral newborn sized outfits. Instead I'm left wondering how big an outfit to buy for my unknown sex, unknown size, premature (dead?) baby. Forget painting any room. I don't think even with a normal pregnancy we would have bought a lot of stuff, because we will always be Aidan's babylost parents and disinclined to count our chickens. But maybe I would have at least made a registry or gone 'baby looking'. How light, how fun.

Today my joys would be simple. I would love to just go for a walk. Feel my baby kick and not worry about cramping or that I'm crushing Acorn. Attend a doctor's appointment that ends with 'things look good, see you in two weeks! '. I would love to bend and smell the flowers in the garden without worrying about how much I will leak if I let myself enjoy that one pleasure. I would like to wake up in the morning and look forward to the day instead of feeling stress and sadness. Yes, in the end if Acorn is alive and okay, it will be worth it, completely and totally. But I mourn the loss of a healthy pregnancy. Mourn the loss of my freedom, of natural, of normal, of safe.

It's hard for me to connect with anyone these days. Our circumstances are so far removed from normal, I can't relate to anyone else's pregnancy or parenting concerns. Those who are struggling with hospital vs. home birth? I would like my baby born in a place where he or she could survive. C-section vs. vaginal delivery? Vaginal would be nice...but I'd take a C-section too if it meant my baby would live. Breast vs. bottle? I'll pump for a preemie and work with whatever the baby needs after that. Rooming in after delivery? Not even considering it. Hold my baby after delivery? I'm hoping not, because that means the NICU team is helping Acorn to survive. My healthy pregnancy dreams have been stolen, and so many of our 'first decisions' as parents will likely be too. And we want it that way, because it means Acorn has a chance.

My friends, family and all of you are urging us to have hope. My doctor is urging us not to. My heart so badly wants to feel light and free and hopeful, but I feel stuck in the mud, pulled down by fear and worry and dread about what tomorrow might bring.

Because what happens if your 'rainbow' doesn't arrive healthy and whole? What if it was all an illusion? A story you told yourself back when the first baby died to help you get through the endless dark days? What happens if all that you find at the end of that rainbow is more heart ache, more disappointment, more sadness, more despair? What if you get even farther and have even 'better' odds than your first dead baby pregnancy and things still don't work out? How do you pick yourself up after that? How does anything in life mean anything anymore?

How do you ever have hope again?

Monday, May 23, 2011

Still baking, still leaking

25 weeks + 2 days, 8 weeks + 4 days post rupture, day 13 at my parent's house.

Still baking. Still leaking. Still recovering after those steroids. They definitely caused fluid retention in my skin and muscles, making me feel a little like a sausage in a casing. I didn't LOOK terribly swollen, but my skin felt tight all over and my legs and feet felt like I'd been standing on them all day (even though I barely stand for longer than 5 minutes at a time). My back and neck still haven't returned to their usual normal bed rest discomfort, even with half a dozen massages my husband gave me over the weekend.

I'm nervous about this week. My mom goes back to work on Wednesday and while we wait to hopefully have nursing home care approved, I've had to ask my mother-in-law and my best friend to share the load and 'babysit' me this week. As much as I hate asking for help, I'm afraid to be alone in case anything happens. I know this problem could be solved by hospitalizing me...but I just can't face going back there to 'stay' yet. I'm not sure when I will feel like it's the 'right time' or if I'll deliver before I get to that point. I hope not. I hope to make it back to the hospital...but with a better outcome predicted so that I won't feel so hopeless and helpless and depressed.

I wish we could have a better idea about how well the lungs are developing. I wish I knew on an hour by hour basis how much fluid I have, and if anything else is going wrong. I wish I didn't feel so afraid all the time. I know I'm repeating myself on here, but that's all I think of all day long and there is very little else to focus on.

I just hope my baby is doing okay. I can take the fear, the pain, the discomfort, the boredom, the stress, as long as Acorn is going to be okay.

In answer to comment #1: Yes I am still feeling movement. Some days more than others, some hours more than others. And if I get nervous, I always have my doppler.

Friday, May 20, 2011

Steroid Side Effects

Since getting my first steroid shot yesterday I've had a sore back. Almost feels like the muscle aches you get when you have a flu. At first I thought my bad and neck were sore from stress (I always sleep poorly prior to doctor's appointments and leave there feeling stressed, no matter how 'okay' the news is). But rather than improving after my doctor's appointment, my back soreness/tension got worse. It was hard to sleep again last night and I needed to sleep on a heating pad in order to get any relief from the neck and shoulder pain. I don't feel any abdominal pain or cramping, leaking is about the same with no bad smells or colour changes present, so I'm hoping this has nothing to do with labour or infection. After my second shot today, my back still hurts in that all overish (not labourish) way. I'm also just noticing a dryish mouth and throat and my boobs have that heavy, milk coming in feeling. Weird.

This damn well better be worth it.

Just wondering if anyone else had any 'adverse side effects' when they had steroid shots? How long did it last?

Thursday, May 19, 2011

Hope we get there

24 weeks + 5 days, 8 weeks post rupture, day 9 at my parent's place. I'm sticking with my ovulation date at this point. Screw doctor's dates.

Doctor's appointment today. Slept poorly last night at the prospect of leaving my safe little cocoon to go sit in a waiting room. I worry about what the doctor might say to crush our spirits a little more and I worry I'll leak a lot, or bring on cramps or labour being up and about. And the appointment was for 8 am so it means I have to get up early! I don't do well with early mornings.

Anyway, the appointment was first. Dr. S. could fill in for Eeyore in Winnie the Pooh if the job ever becomes available. He's such a downer. He basically said that while it was 'good' that I'd made 24 weeks (longer than last time), we are still looking at a very poor outcome because of how long my membranes have been ruptured. Yeah, thanks we know, Eeyore. I worry about this on a minute to minute basis, you don't have to remind me. Then we asked about getting me a private room at the hospital. He basically said that infection risk was not a good enough reason. When we told him I couldn't sleep due to the anxiety and stress of the situation and having a roommate made it worse, he said he'd ask the hospital administrator if 'anxiety' was a good enough reason, but that he wasn't very hopeful. So then I flat out said "well then I can't be hospitalized. It's just too stressful". I hope he understood how strongly I feel about this. It's pretty serious when your pregnant high risk, congenital cardiac patient is refusing hospitalization. Maybe he'll push on my behalf...being a well respected, high powered OB has got to be good for something.

Our alternative plan at this point is using my insurance to pay for a private duty nurse to come and stay with me during the day while I live at my parent's house. My mom has to go back to work next week and I'm afraid to be alone during the day. My doctor said he would sign any paperwork I need to get this in place if that's what I wanted but he didn't feel I 'needed a nurse'. He just said that I need someone there to be able to get me to hospital if need be. Uh, yeah, Dr. S. that's the point. Of course he'd be willing to hospitalize me with round the clock nursing care, who check me multiple times a day for fever, pain, cramping and check the baby's heart I don't really see how this is much different. Likely cheaper for the health care system. Go Emily, saving the province money!

I then had an ultrasound which actually was better than I expected. My AFI was at 6.1! This is low, but adequate for lung development. Flow through the umbilical cord is normal. Baby's measurements are all over the place, but I'm not really concerned about that since bloodflow is normal and adequate for growth, and I think there is a lot of measurement error with the AFI being low. Also, Acorn scored an 8/8 on the biophysical profile, including getting a 2 for 'breathing movements'. I know other pPROM moms have been told this is not an indicator of adequate lung development for breathing outside the womb but it does indicate that Acorn at least has enough room to allow chest expansion and has the neuromuscular control to coordinate his or her diaphragm. Good stuff I hope.

Then I had my glucose tolerance test. That drink isn't that bad. I don't know what everyone complains about.

For the finale, I also had my first steroid shot to assist with lung development. Worth it, but still, Ouch! My whole left gluteus maximus is now sore. Tomorrow I have to go back to get jabbed in the right buttock. Fun times.

I still don't know what we'd do about a C-section at this point. Currently the baby is breech and Dr. S. said that if we really wanted to 'go after this baby' a C-section would be the way to deliver...but he's not sure he would recommend it due to 'poor prognosis' at this point. I must agree. My gut says its not worth it...yet. But a few weeks down the line, if we get there, things might be different.

I really hope we get there. Please Acorn, keep hanging on! Mommy's doing her best to keep you safe.

Update to answer Melissa's question (comment #2): No there is no reason per say that I couldn't go many more weeks...but as Eeyore was saying, it was unlikely 8 weeks ago that I'd still be pregnant today, so any more time is 'pleasantly unexpected' medically. But if you check the pPROM boards on babycenter there are women out there who make it into the 30 week range who ruptured around the same time as I did, so it is technically possible. My cervix is maintaining (3.1 cm measured today), so infection and bleeding are our two major issues, other than having low fluid. Probably the same thing that caused your pPROM at 31 weeks was the same thing that threw you into premature labour (infection or incompetent cervix), but since it was likely my abnormal placenta that caused my pPROM, there is nothing that has (so far) caused labour to start. Things I'm doing to prevent labour is laying around to avoid pressure on the cervix, drinking massive amounts of fluids (4-5 L per day) to prevent dehydration and encourage amniotic fluid build-up. I wash my hands obsessively (before and after going to the bathroom), I take probiotics, extra Vitamin C, D, stool softeners, antibacterial wet wipes after bowel movements and a collagen drink once a day (strengthens tissues, including hopefully my amniotic sac). Hopefully something is helping...but I did almost none of this except the water and the laying around last time and I still lasted 10 weeks post rupture so who knows if this is just how my pPROMs go.

Monday, May 16, 2011


24 weeks + 2 days, 7 weeks + 4 days post rupture, day 6 at my parent's place. (doctors consider me 24 weeks today)

The hardest part of this situation is the lack of control. My hopes and wishes have no bearing on the outcome. They didn't last time and they certainly haven't this time.

When you have no control over a situation many people turn to God. They rail at God for the unfairness of the situation. They are angry at God. Or maybe they feel God supports them, or will take care of everything in the end. They feel they are on a path and maybe the terrible situation is just part of that path.

Since I don't believe there is a 'God' overlooking my life, I have no one to 'blame' or feel angry at. It also means I have no one (including God) that I feel has any control. I have no idea why this has happened to us (again), and I hate thinking that 'someone' such as 'God' could have 'decided' to deal us such a horrible situation twice in a row, less than a year apart. What possible 'lesson' did I need to 'learn' that I didn't grasp LAST YEAR, the FIRST TIME this happened?

When I was born with a heart defect, my parents asked themselves a lot of the same questions. "Why us? Why our baby?" and my great-uncle (who lived to be 90 something and was a very smart guy), said "Why not you? You are not exempt from life's struggles". My parents told me this story years ago, and I found it helped me after Aidan died. Yes, why not me? I did nothing to deserve it, but nor was I exempt. Sometimes babies die. Sometimes it's my baby.

Entering this pregnancy, I also referred back to this idea and looked at it from the flip side. Because if you aren't exempt from life's downturns, you also aren't exempt from upswings either. Good is just as likely to happen to you as bad. And hey, losing a baby is pretty bad...but hey, it's also pretty rare! So, with this in mind, it could not be more of a blow to find ourselves here again. How could this happen? Why did this happen? Will it always happen? No one knows. It's exhausting to think about. Honestly, I think I'm done with this 'growing as a person' shit. I just want something to be easy. I want to float around in blousy maternity clothes and complain that the weather is 'too hot' and that I feel 'big as a whale' and that "I'm 24 weeks and I've hardly done anything on the baby's room!". I want my most stressful doctor's appointment to be concerning my glucose tolerance test. "Damn, an orange fuzzy drink that tastes just about ruined my day!". I want the baby shower, the embarrassing belly rubs in public places, the (almost) certainty that I will one day be addressed as "Mommy".

Sure the situation could be worse, I suppose, but it could also be a HELL of a lot better. Why isn't it? Why us (AGAIN)? Go away, fate, destiny, God, the universe, karma...pick on someone else for a change.

So, since I have no God to really question as to why I ended up on 'this side of the fence' again, no all mighty power I can trust to 'ensure everything is okay', I'm almost embarrassed to admit how superstitious I am. I have a hard time planning for even later in a day "just in case I jinx it" and I dare not plan for tomorrow. When we talk about 'the baby', my husband and I have given in to crossing our fingers (and toes, and occasionally our eyes). Up until my membranes ruptured we were knocking on wood. Obviously that wasn't terribly successful so we had to switch tactics.

Last Friday I allowed myself to go sit in a chair on my parent's deck, just to get some sunshine. I had my husband take a few photos and then immediately thought "oh no, why did I do that?!" Last time we took outdoor photos of me during my pregnancy was April 19th or 20th 2010...and 2 days later I wasn't pregnant anymore. Then there are the pyjama bottoms I was wearing when I started gushing blood when I was pregnant with's been over a year and I've hardly worn them since. Now that all this has happened, I don't even like touching them. Even my doctor's office feels tainted. Maybe we should have insisted on a new OB (heart defect and best prenatal care in the province be damned!) because I can hardly stand to hear the guy's voice. These are all the stupid ways I feel 'in control', when I logically realize none of them matter.

How I wish I could do something that matters. Something that could make a difference.

If we could Acorn, we would. Mommy and Daddy love you.

How do you deal with the loss of control? What makes you feel more in control of your situation?

Saturday, May 14, 2011


24 weeks, 7 weeks + 2 days post rupture, day 4 at my parent's place.
(doctor's dates put me at 23 weeks + 5 days).

Still baking. We've passed the gestational age that Aidan was born at even by the latest due date that the doctor's have me at.


I'm still pretty down, but distraction is easier here at my parent's place. I have good food, my mom, my dad and Brian to talk to. No one bothering me to take my temperature or blood pressure every couple of hours. No one wakes me up in the morning to take pills. No one wants to hear the medical story of my life. Everyone here already knows it. It's such a relief.

I have been sending e-mails to update family and friends. I didn't do that at all when I was pregnant with Aidan. Some people didn't even know I was pregnant until after he died. I kind of regretted that after the fact, as I feel like maybe I missed out on letting people support us. Or maybe they would have been sadder for themselves if they knew Aidan was 'coming' and then he wasn't. So I've tried to do more 'sharing' this time around. My e-mails are a shortened but accurate description of what is happening. I try not to sound too hopeful, but also not too pessimistic. And I continue to be appreciative of all the e-mail support I've gotten back.

One thing that I've found really hard about letting more people in on the loop is the inevitable response of people wanting to come to visit, either when I was at home, or at the hospital or here at my parents place. People often want to schedule these visits days in advance and I'm at a loss as to what to tell them. My friend texted me the other day and said "How about I come by next Friday?" I literally don't know what to say because I have NO IDEA as to what will be happening next Friday. My plan is to still be waiting it out, pregnant at my parents' place, with no pain, no bleeding and hopefully building up fluid. The reality could be very different.

People don't get the moment to moment worry this situation causes us. How I could literally be laying around, watching a movie, sleeping, having dinner, or 'entertaining' guests and something could happen. I could spike a fever, start to cramp or bleed. I could have silent dilation of the cervix and the cord could prolapse cutting off the blood flow to the baby. Acorn could literally go from fine (or fine-ish) to dead in less than the amount of time it takes to brew a pot of tea. This morning I got up and realized I hadn't really felt him kick in awhile...and I thought "this could be it, he could be already gone. I might be delivering today". My next thought was "at least I got a good sleep last night if that's the case". A quick check with the doppler said his heart beat was still it's normal 150-ish so that was a relief, but just brings it home that any day, any hour, any minute, could be the end.

I really don't want other people (other than my mom or Brian, or my brother or dad in a pinch) around if that is going to happen. Brian feels the same way. He wants to be with me, just in case, and any distraction (including work) is hard to endure. Do I miss people and wish I could distract myself with visitors? Absolutely. Do I wish I could get outside and do something normal and fun to while away the time? Of course. It's not that I feel like these prospective visitors are bothering me. I wish very much that I could have a parade of them...but I'm afraid of what my body might do when they're here. I guess I could liken it to when you have the flu. You might barf at any moment and you don't want people, even nice, kind people like your best friend or your extended family members around if you're going to have to run to the bathroom.

So while pregnancy is usually a time to gather your friends and family around you to celebrate and wait in anticipation, a time for parties, gifts and exchanges of knowledge and support...I'm alone.

And sadly, I like it that way.

What the heck happened to all your lovely comments on my last post? Stupid Blogger stole my comments and didn't give them back!

Wednesday, May 11, 2011

The Known and The Unknown

23 weeks + 4 days, 6 weeks + 6 days post rupture, 1st day at my parent's house

(Note: Doctors are putting me 2 days behind this due date I'm 23 + 2 according to them).

I lasted 5 days in hospital before I couldn't take it anymore. I was lonely, sad, miserable, uncomfortable and not sleeping. But the straw that finally broke the camel's back?

I have no fluid left.

It is all gone.

Acorn continues to be breech, and it sitting directly on my cervix. Any fluid he makes immediately comes out. Unless a miracle occurs, I think my days of building up fluid are over. It feels like the universe is conspiring against us.

After my ultrasound, I laid in my hospital bed and cried and cried (while my room mate sat behind the curtain and chatted with her Dad. Weird feeling to be sobbing and in the depths of despair while overhearing normal conversation). I had hoped for even just a bit of fluid. A lovely pocket or two. But the ultrasound now looks just like Aidan's. A baby who is jammed between a giant ball of a placenta and the uterine wall. I was crushed. Brian was crushed.

They sent in a Neonatologist to talk to us. I knew her. She used to be a fellow (doctor in training) at the NICU where I worked. Now she's staff at this NICU. It was weird discussing MY baby with her and not a patient. She knows I know the score. She stated that their hospital's 24 week survivor stats are about 60% (better than I thought, although she didn't comment on their 'intact' survival rate). However she did say that baby's born to pPROM moms tend to do poorer than a 24 weeker whose mom has just gone into labour after a normal pregnancy up to that point. She didn't say how much lower our chances of survival were, just 'lower'. Basically said it would be evident immediately or very shortly after delivery as to whether Acorn's lungs had developed enough to continue life support. It was awful to watch Brian during this conversation. He just sat there staring into space. It was like he wasn't listening, wasn't hearing...had just shut down. It was kind of scary.

My doctors were happy to let me go to my parent's place. They know I know how bad things are. There was and is nothing they can do until "24 weeks", and generally they wouldn't even have considered admitting me until I reached that point (which is Monday in their eyes). So last night we packed up my stuff and came to my parent's house. We have a letter to give paramedics directing them back to that hospital in case I go into labour. They have a file started on me in L&D triage so hopefully there will quicker action and less 'fussing' if I roll through the door in labour(last time they wanted to put me on a monitor to detect the baby's heart rate and have me pee in a cup...and I was in too much pain to say "JUST START THE FUCKING IV IN CASE I CODE!!!!" I have since directed my family to advocate on this point for me).

I tried to stay at the hospital for my husband's sake. I know he was more comfortable having me there...but with the hopes we are being given right now (literally zero unless I can make 24 weeks and even then it's low), I just couldn't stay there. I can't lay in that hospital bed, with the baby's heart beat being checked multiple times per day, and people asking me if I know whether it's a boy or a girl, or seeing posters on the wall about baby development and breastfeeding...and all the while thinking, "what does it matter?" As much as I love Acorn, being in that hospital doesn't help him at all right now, and while it might marginally make me feel medically more secure, it was crushing me emotionally. I kept having panic type attacks and each time I would be afraid to alert the nurses in case they thought I was in labour, or something bad was happening with my heart. I feel I can monitor myself just as well here. I'm now living 20 minutes down the road from the hospital. I just hope it will be close enough if anything starts to happen.

It is awful to be caught in this world of 'knowing' and also 'not knowing'. We know how hard it is to lose a child. We know how scary and possibly dangerous my delivery might be. We know how important it is to be close to medical care. We also know I recovered well from delivery last time. We know we got to spend precious time with our child after I delivered, even though he was dead and that we will cherish those memories forever. We know how much we love Aidan and how much we love Acorn.

We don't know how much longer I'll stay pregnant. We don't know if Acorn's chances will be zero or > zero when he eventually arrives. We don't know how sick he might be if he does make it through the immediate delivery period. We don't know how well I'll handle delivery. We don't know how we will financially cope with all the income lost over the last few months. We don't know when would be a good time to be admitted back to hospital if I do continue for more weeks. Should I go back at 24 weeks or wait longer? Will me being hospitalized make a difference or not?

The weight of the decisions, sadness and the unknown is almost unbearable.

Sunday, May 8, 2011

I hate it here

23 weeks + 1 day, 6 weeks + 3 days post rupture, day 4 in hospital.

I hate it here. I really do. I am not getting the same amount or quality of sleep that I got at home and that makes me very very anxious and dread going to bed. Even when I manage to fall asleep I wake up a lot. My husband stayed over last night and he fell asleep faster in the lounge chair then I did in my bed. The bed is not all that comfortable and I HATE HATE HATE being in a semi-private room. There is no privacy. My room mate now knows my entire life story after me having to reiterate it so many times over the last couple of days. I don't really CARE per say about this (I'm much more uncomfortable with the physical intimacy of sharing a room rather than the information sharing), but it makes the idea of our 'health care information being private' such a joke. I always thought that as a nurse when I'd have patients in multi bed rooms, but it really brings it home now.

The nurses also wake me up at 6:30 am to give me medication (antibiotics) and to take my temp, my blood pressure, my heart rate and my sats. After this I have a hard time going back to sleep. Then the night nurse goes home at 7:30 am. By 8:30 am the day shift is trying to get all their assessments done and come in to do my room mates vitals and listen to her baby on the monitor. LOUD LOUD LOUD. At home I was going to sleep around 1-2 am (normal for me because I was used to working afternoons) and sleeping usually fairly soundly until 11am. I felt well rested and I didn't worry about people waking me up. Actually the morning is when I would feel the best and the least anxious.

I'm also way more terrified of contracting an infection here. I don't have a washroom all to myself and I scrutinize everyone who comes in my room (sorry my 'space') as to whether they've washed their hands or not. I'm going to start using my own toilet paper and I have antibacterial wipes to try to keep myself and the toilet seat as clean as possible. It's awful worrying about this all the time. I know I could get an infection at home (in fact I did develop an infection in the placenta with Aidan which is what likely threw me into labour), but I wasn't being nearly as careful last time as we weren't entirely sure I actually ruptured until very close to the end of the pregnancy. It sucks to have to carry my toilet paper, pads and sometimes wipes to the bathroom every single time I have to go, since that happens about 10-12 times per day.

I am regretting my hurry to be admitted. At home I was nervous about going into labour and not making it to this hospital in time. I was worried about the effects bed rest was having on me physically. I am still nervous about that 'end point' and what it will look like (major pain? infection? deleterious effects on my heart?), but do feel confident that the medical team will be more 'on top of it' than they were last time (all that monitoring they are doing has GOT to be for something). On the other hand I'm now anxious and stressed and depressed all the time just being here. I cry multiple times daily, while at home I cried maybe once or twice a week. This place is bringing down my mental state and I'm afraid if the baby dies, I won't be in a healthy mental state to cope with it.

An alternative to staying here is going to live with my parents who are about a 15-20 minute drive away (7 minutes if there is no traffic). I would feel physically more comfortable living with them and I am pretty confident that this is the hospital the ambulance would bring me to in the event we had to call one (whereas if I were at my house this is not the closest hospital). My parents are more than willing to have me live with them, and for the next week and a half my mother is actually off work so there would be someone with me at all times.

Brian, however, feels I am in the safest place and would be angry with me if I said I wanted to check out. He is already talking about spending $100/day to get me a private room here at the hospital if that is what would make me more comfortable. What I feel he doesn't get, is that I don't WANT to spend $700 a week on a hospital room!!! That seems insane. I don't WANT to carry any more debt. Would I be more comfortable in a private room, yes, absolutely...but probably not $700/week more comfortable!!!!

What I would like, if he won't let me leave the hospital, I would like Brian (and our cat) to stay with my parents. I feel it would solve a lot of the 'extraneous' worries I have that don't involve myself or the baby. If my husband lived there he could take the subway and be here soon after work to be with me in the evenings and on weekends. This eliminates the parking concerns down here at the hospital (he can't arrive before 6pm on weekdays or otherwise it's $20 to park). It also would mean my parents could do things like shopping, cooking, cleaning and spending time with our cat so that Brian could spend more time with me. I hate that he had to go home today at 3 pm in order to get those types of things done, and I feel guilty wanting him to stay because I know he needs to shop, clean, make meals and generally take care of our house while I'm here. Plus at our home he's still 25-30 minutes away at night (or more if there is an accident on the highway) if something happens and I go into labour. If I needed him in a hurry I would feel a lot more comfortable with him being close by then farther away at our house.

His reasons for not wanting to stay with my parents are EXACTLY the same as the reasons I don't want to be at the hospital. In short, he wouldn't feel comfortable. He wouldn't have his own bed, his own stuff, his own bathroom, his own computer. I get it. I really do (obviously). But come on! I would have no desire to live with his parents either if the situation were reversed, but the savings in parking and gas ALONE would be worth it to me for the inconvenience of having to 'move'.

Maybe I'll feel better if I make it to 24 weeks. But, something tells me I won't feel more 'hopeful' until closer to 26 weeks plus. Honestly, I'm not sure I would want to do 'major' resuscitation on a 24 weeker. If the baby arrives at 24 weeks and attempts to breathe and cry, of course, intubate. But what if two days later the baby has brain bleeds, and needs higher and higher levels of O2 or respiratory support? What if the baby develops a major infection? Yes I know the general public seems to feel '24 weeks' is a major milestone, but the stats say only 40% of 24 weekers live, and less then that survive without major complications. I know. I've seen it. Parents sometimes get so caught up in the 'That's my baby! Do everything to save my baby!' that they don't consider who they are 'saving' their baby for. Being a parent means making hard decisions...and I want to keep my baby's welfare in mind, rather then my own desire to have a living child.

I've said it before. I would bring Aidan back in a heart beat, but I wouldn't bring him back to live a life that I wouldn't want for myself. Could I accept a G-tube? Yes. Oxygen for a period of weeks or months? Sure. Physical therapy or surgery? Yep, we can deal with that. But there are outcomes worse than death that I wouldn't want for my child. I just really hope I can physically, mentally and emotionally cope with what is to come.

If you want to leave a comment today please be mindful of my mental state. As much as I know everyone is trying to be hopeful for me, I'm just not there today and cheerfulness is too much to bear at this point in time.

Saturday, May 7, 2011

Rough Day

23 weeks, 6 weeks + 2 days post rupture, day 3 in hospital.

Yesterday after my morning started okay, but it quickly went south. After breakfast the psychiatrist resident shows up. I didn't mind talking to her as it was nice to share some of my sadness, concerns etc about being in hospital and how afraid I am that I'm going to have another dead baby. She was nice and at least she was someone to talk to.

But then, not long after she left the social workers show up, and I have to go over my whole medical/life story again. Heart defect, happily married, working in NICU, pregnant, bleeding, off work, scary delivery, dead baby, grief, grief, grief, new job, pregnant again, happy, rupture, sad, bed rest, off work, shreds of hope, leaking, and now hospital. The social worker and her student were also nice and tried to be helpful and recommend things to keep me busy here (book cart, movies, talk therapy groups etc). After they left I was exhausted. I've run through my sad story twice with two different (caring) but also somewhat intrusive professional groups.

My mom showed up about this time, and although I was glad to see her, I could have used a nap. I was all upset and sad from my over stimulating morning and pretty much wanted to just lie there.

Then, the congenital cardiologist showed up (barged in) is more like it. With barely any discussion or preamble he states that "your heart rate is quite high so I would like to have you on telemetry monitoring". Telemetry monitoring is basically being attached to cardiac leads and then you are required to carry around a walk-man sized purse like recorder that keeps track of all the data and alerts the desk if your heart rate is 'too high'. I FREAKED OUT. I know it seemed like a 'small' thing to him, but it was just the LAST straw. I'm already so depressed about leaking, about giving up my home, about the fact that even though I'm here at the hospital there is 'nothing we can do for your baby right now'. I already worry about my health and my heart and my mental and emotional ability to carry this baby...and it was like this cardiologist was just confirming my worst fears "you're a cardiac patient, you are abnormal, you might 'decompensate' at any moment and we need to have you monitored at all times in case your body starts to give up". It was horrifying.

On Wednesday when I was at home, no one was monitoring my heart, no one was concerned about my heart rate. There were no nurses taking my temp every 4 hours. No one was waking me up to give me antibiotics every 6 hours. I was scared to be alone, but at least I had some control over my body, over my surroundings, over my life. Now I feel attacked by 'helpfulness' and I'm constantly feeling like I have to defend myself "no I don't have any cramping, no I don't have any heart palpitations, yes I'm still leaking yellowish fluid, no I need anything else" etc etc. ad nausem.

As you can imagine, this cardiologist was unhappy with my unwillingness to submit to his constant monitoring. I said he could do an ECG to monitor my heart if he wanted to (which takes about 5 minutes, and was done not 10 minutes after he left), but I was NOT being hooked up to machines on a permanent basis. Not now at least. If anything changed or I was feeling like my heart was becoming an issue, then yes, absolutely, monitor the hell out of me...but I'm not in the hospital because of my heart! I asked him to go back and review my history (he had read a total of ONE note on me and had not even seen a recent ECHO), and talk to my regular cardiologist before he proposed any other treatments. He seemed kinda pissed when he left, I was in tears, my mom who watched the whole interaction was trying to be supportive and placating at the same time, and then my brother arrived!!!!

I was anxious and stressed out for the rest of the day. When Brian arrived in the evening, I wanted to beg him to take me home. I hate this place and hate what it's doing to me mentally. They haven't even given me an ultrasound yet (my one and only favourite monitoring device) to check on how much fluid I have. I might not get one until next week or the week after.

After Brian left, I couldn't sleep. I was absolutely exhausted, but my mind was racing. I couldn't get my heart rate to slow down (scary! maybe I do need monitoring! maybe something's wrong with me!) Finally at 1:30 am, I called the nurse and asked for some Ativan (a mild sedative that's safe for baby). She was lovely and sat in my darkened room and talked to me for a few minutes until I felt calmer. After that I was able to sleep...until 6:30 am when they woke me up for temp and blood pressure checks and to give me my antibiotic. Fortunately I was able to sleep again (fitfully as my room mate was up and about around 8:30 ish), but I refused to move until after 10 am.

Now it's afternoon and I have a friend coming to visit and she's going to bring me lunch. No doctors have been in to bother me (just the nurses), so I'm okay right now. I'm dreading the cardiologists arrival as he said he was going to come back to see me over the weekend. I'm sure he's labelled me an 'uncooperative and hostile' patient, but I don't care. I'm not going on constant cardiac monitoring unless there is a damn good reason. And I really hope to never give him the satisfaction.

Are there medical professionals you've met over your lives that you've had confrontations with? How did it leave you feeling? How did you resolve the issue?

Friday, May 6, 2011

Leaking = Sucky

22 weeks + 6 days, 6 weeks + 1 day post rupture, 2nd day in hospital

Okay, I'm over being in hospital now. I've been here 24 hours and I want to go home. I miss my comfortable bed, I miss my cat, I miss my own washroom and my own sheets and my own windows. I miss not having strangers barge into my room unannounced (as a nurse I know they have to do that, but damn is it intrusive). I miss being able to do my mini stretching exercises on my carpetted bedroom floor which I was trying to do to keep myself in some sort of 'shape' that didn't resemble 'blob'.

It is hard to contemplate that the longer I'm here the better it is for Acorn (and we're not even sure of that. If he goes without fluid for long enough, no matter how long he 'bakes' his lungs won't develop), but the longer I'm here the worse it is for me physically and mentally. I want this baby to come home healthy...but damn the cost of that is high. Will it be higher than I can take? Higher than I can give? I don't know. I hope not.

Leaking is also extremely hard on me mentally. The last few times I've leaked I've 'sealed' fairly quickly. Usually the leaking would taper off within 24-36 hours and I'd be dry for days (2 weeks last time) until it would start again. But it's been 36 hours now and I'm still feeling 'gushes' when I move. I'm worried this time it's not going to stop. It's hard. I feel so bad every time I feel a gush. I feel like I'm leaking Acorn's life away and there is nothing I can do about it. I'm trying to be really clean to prevent infection, but that's harder in the hospital too. I'm worried about everything (Germs on the toilet paper? I have to share a room, so does my room mate have any illnesses? Staff members in and out of here all day long, none of you better be sick and for GOD'S SAKE WASH YOUR HANDS!) It's awful. I've lost control of my body, lost control of my ability to protect my baby, and now I've lost control of my space.

At the beginning of this pregnancy I was SO SURE things would be different. Possibly something bad would happen, but most likely everything would go well. Things couldn't go exactly the same as last time. Right? Right?! I think I even said to my husband "I don't think we could repeat the same exact circumstances if we tried". Everyone was so sure it was a 'fluke'.

But here we are again, and holy shit does it ever suck.

Thursday, May 5, 2011


22 weeks + 5 days, 6 weeks post rupture. 1st day in hospital.

Started leaking again last night. Scratch that...gushing.


I called my doctor's office and my nurse said to come down to L&D triage. I ended up in the same triage room where I barfed my guts out when I was in labour with Aidan. I kept my eyes closed most of that visit due to the extreme pain, so today I was able to look around a bit. There wasn't much to see. The nurse came to see me quickly, as I don't think they were that busy and basically I told them my story and said I wanted to be admitted. I am too frightened of going into labour at home at this point. So within an hour I was in a 2 bed hospital room (at least I got the window bed) and am now officially an 'in-patient'. Likely I have low to no amniotic fluid at this point and they have warned me that there is a high risk of delivery within 48 hours, in which case nothing could be done for Acorn.

All stuff I know.

I am majorly depressed. I had hoped to make it until next Thursday at home. I had hoped not to leak anymore. I had hoped for so much better than this.

Tuesday, May 3, 2011

Dare I say, Good News?

22 weeks + 3 days, 5 weeks 5 days post rupture

Appointment today at the fetal medicine clinic with Dr. K. The hospital associated clinic that I go to is divided in the following ways. It has a maternal medicine clinic where I see Dr. S. It has a fetal medicine clinic where I see Dr. K, and it has an ultrasound clinic across the hall that is a separate entity, but that does all types of OB ultrasounds (NT scans, Anatomy scans etc). So far in this pregnancy I've seen Dr. S. at his clinic (maternal medicine), and I've seen Dr. K. on his days acting as the physician at the ultrasound clinic, but I hadn't yet seen Dr. K. at the fetal medicine clinic.

Anyway, the reason this is important is because I really like the fetal medicine clinic. Anyone who is booked there has an ultrasound automatically at every visit. Their notes are done on computer so at the end of the appointment you can ask for a print out of all the measurements they took during your scan. The ultrasounds are done by nurses (rather than techs) who are really nice and actually TALK to you during the scan and tell you what they are seeing. PLUS if you're REALLY lucky you get the room where there is a screen for mom to watch the ultrasound in real time while they do it (I lucked out today!). Although this was the clinic that first discovered my placental abnormality with Aidan, where we first knew things would likely not be okay (bad memories), out of all the places I go for care, I like it the most.

Anyway, I was really nervous again going into this appointment. I'm terrified every time I leave the safety of my house that I'll leak and it really sucks when it happens in a public place. I usually just want to get these appointments over with.

We were called in and the nurse doing my scan was really nice. She went over all my medical history and actually asked how this was affecting us mentally. ie: How was Brian going to work? How was my family coping? What were our concerns? We FINALLY felt able to tell someone "Look, I'm terrified to go into labour at home and that I won't make it to the hospital in time. My blood pressure dropped significantly last time and as much as I want this baby to be okay, I REALLY need me to be okay". She was really nice about it and I felt heard. Then she did my scan.

While my placenta still looks grossly abnormal, it's doing it's job nicely. Baby is getting normal blood flow through it's cord and to it's brain. My uterine arteries are getting normal flow to the placenta. The baby's head and abdomen are both more 'oval' shaped than normal, but contain all normal structures and are growth appropriate when the circumference is measured rather than the diameter (if you measure the diameter they look at the narrow part, not giving a good picture of how big the baby actually is).

She was able to see the heart in better detail than at my anatomy scan and confirmed that from what she could visualize the heart looked normal. Best part was that she was impressed with my fluid level and my AFI was 11!!! That is NORMAL! I have been retaining fluid. It's not just my imagination. Next she checked my cervix which I was worried about going in, since the tech last time told me it was 2.5cm (down from 3.2cm at 16 weeks). The nurse looked and said "it's almost 4cm long, and closed"!!! YEAH! That's the longest it's been measured this pregnancy so I hope it's accurate. She tried really hard to see the sex, but Acorn's legs were firmly folded close and he (or she) wouldn't let us get a shot. As much as it would be nice to know, I honestly was too happy about my fluid and cervix to care.

After we got all this good news it was on to Dr. K's office. As per my ultrasound photos he thinks that there is quite a bit of normal tissue anchoring my placenta to the uterine wall and that is why I'm not bleeding like I did with Aidan. This normal tissue is also keeping my uterus 'quiet' so that I'm not having too many contractions (although I am having a few, occasionally, usually if my bladder is full or if the baby is moving a lot). He felt the baby and I are doing as well as can be expected given my placental condition, but was considerate to the fact that I am very anxious being at home given my prior history and my current situation. So the plan is to admit me to hospital next Thursday, when (by dates) I will be 24 weeks! Although I'm still nervous about getting to that point, I'm feeling better that a plan is in place and that hopefully soon I will feel safer. I think Brian is happy with this too. It's been so stressful for him, being afraid he's going to have to rush me to the hospital at any time. We also got all the consent signed for the BioBank collection of the placenta. So that's in place too.

Now it's just waiting. Hopefully no more leaking, no infection, no bleeding, no contractions and keep Acorn growing. Just gotta keep everything status quo. It feels good to have some hope, something to shoot for, but nerve racking too. We've been down this road before...the waiting to be admitted to wait for our baby to grow...and we didn't make it. Is this the calm before the storm? Or an indication of good things to come?

Please, please, please...

Anyone been admitted to hospital for long periods of time? Can you think of things I should pack? Also, thank you everyone who has been keeping up with me and leaving me comments. I love hearing from all of you. It helps me not feel so alone.