Leaking

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 "soooo....how 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!

Scared

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.

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?

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.

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?

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.

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.