Friday, September 27, 2013

The Failure of Language

I consider myself to be somewhat academic. Through my undergraduate and graduate degrees I enjoyed examining language: sexist, misogynistic, violent, ambiguous, labelling, accurate... 

For example, given that my profession is in social work, I discourage the use of the "I feel" as a colloquial, and slightly passive way of describing a desire or preference. "I feel like a hamburger." or "I feel like you do not like x". These are not emotions, they are opinions. I was guilty of this for a long time, but now tend to use "I would like" or "it seems to me" in place of "I feel like". I digress... 

My slight over-analysis/totally reasonable fixation on language has added to some of my difficulty with pPROM and blogging. I want these children. Saying that does not do justice to the truth and sentiment therein. I pray to have these children. I beg the universe for these children. I hope, I wish,... none of these words sufficiently describes the desperation, love and fear that I feel when I think about the end of this journey. 

Every night I lie in my bed beside Lee while he sleeps and place my hands on my belly. I can feel kicks and movements within and outside. I channel every bit of love I have to them. I take deep breaths and visualize them going to my womb and each child. I think about how much I want these little Peas in a Pod to become my babies, children... I want to nurse them, play with them, see them learn to speak, go to school, have friends... Lee and I have a life and a lifestyle we hope to share with our children. We want to take them on trips, laugh, have morning snuggles, decorate Christmas trees, rake leaves... everyday stuff and out-of-the-ordinary stuff. 

And to be extra clear, I want happy, healthy children - because, who doesn't? I want my children to have quality of life. I want the world to literally be their oyster. 

Losing a child, when it has become a child (at this point they are likely to live for an hour or more before dying) but before it is strong enough to survive as a little person for long, I am not only losing a family member, I am losing everything I planned and hoped for that individual, us and our family. I will grieve the way our family used to be. I am losing any 'getting to know them' - I will never know about their sounds, facial expressions, preferences that can be seen so early in life. I will never know their personalities. 

So, saying "I want these babies" or "I want them soooooo much" or anything else simply does not, cannot, come close to accurately depicting the strength of that desire and love. This whole blog does not articulate what I feel deep within my core: that thing that has given me the where with all to continue this fight in the face of awful odds. I am so terrified of losing these children - one or both - but I already love them too much to not give every inch of my body and self to trying to bring them into this world. 

Facebook status: Never has language failed me so hugely and never will I take for granted my children

Update

So yesterday I made it to 21 weeks. We spent the day at the MFM clinic getting an update. The ultrasound revealed that Baby A and Baby B are both still gaining weight and have healthy heartbeats. The internet tells me that the average weight for a baby at 21 weeks is about 12.7 oz. Baby A is 12oz and Baby B is 14oz. I am hoping that next time we go both babies could be above one pound. 
Baby A continues to have cysts on the brain and had no measurable fluid. The membrane being stuck to the arm was not visible in this ultrasound, so fingers crossed that it was just a fluke last time. 
Baby B looks well, no concerns noted. 

We went over some of the things to be considered around viability and I was surprised as my MFM specialist's responses compared to what I have seen with other women. In the next few weeks I will have to do some research so that Lee and I can figure out what we are most comfortable with.  

Facebook Status: Keep on hoping, keep on coping...

Wednesday, September 25, 2013

In my Grandmother's words

Lee has been away for two nights now and I have barely slept for those nights. Instead of sleeping, I toss and turn, thinking of blog posts, ideas.. my time before sleep with Lee is usually used to debrief and when I am alone I tend to have circular thinking that keeps me awake. Along with my typical hope and doom thinking last night, I also thought of two things: how scary new symptoms are and how much I have changed (perhaps I will leave that latter for another day). 

Part A
To quote my maternal grandmother: "What new hell is this?" That is what I was thinking last night. I noticed on Sunday evening, the one time that I decided to leave the house in weeks, that I had more fluid leakage than that to which I have become accustomed. I was then distracted by all that pain Sunday night and Monday. It was last night that I realized that each day since Sunday I have lost more fluid. I am now leaking twice per day and each time it is more fluid. And if that's a new pattern, then honestly, what new hell is this? I am not ready for this to be over. While I remind myself frequently that this is out of my control and I have given it my best, there is a side of me that insists that I make it to viability or beyond. But, more fluid loss? Where is this fluid coming from? Does this mean Baby A is having less (perhaps imagined) time spent with some fluid around? Was there something else floating around in there that we do not know about? Or, God forbid (and I do not consider myself to be religious), is Baby B now losing fluid too? Baby B's health has been something I've relied to keep me going, but what if it is now compromised as well? Please, make my brain stop thinking. Stop guessing. Go to sleep! 

This morning I posted on various support groups and have been informed that as babies get bigger they can produce more fluid and that it is typical to notice an increase in fluid loss as the pregnancy progresses. My fingers are crossed that this is the case. Ultrasound and MFM appointment tomorrow will hopefully shine some light. 

Facebook status: Every day seems to be a new hell, but each with at least the hope of having had one more day

Tuesday, September 24, 2013

Scary Moments and Magical Thinking

I am not sure that I have any regular followers, but some may have noticed that I did not post yesterday - or on the weekend for that matter. I tend not to post on weekends simply because EllaGrace is home and there is generally more comings and goings. But yesterday I did not post anything because I was scared. On top of which, Lee left for a work trip to Toronto yesterday afternoon, a separation that I have been quite anxious about in general. 

The thing about Lee leaving is that half of my brain really believes that this could jinx us. If something is going to go wrong it is bound to happen while he is away. Then I will say "I knew something was going to happen... you never should have gone." The other half of my brain that functions more on the basis of logic is aware that this is not exactly how things work. But it is scary nevertheless. He would be four hours away: he could miss the birth, I might have to make big decisions without him, he could miss his only chance to meet these babies. Jinx-y!!! So, my fingers are extra crossed that I will be okay (more so than usual? Maybe..  but not sure that I can hope more than I already do)

Funnily enough though, the night before he was scheduled to leave (Sunday night) as I was getting ready for bed I started having this dull pain in my lower abdomen. I tried sitting and lying down but it would not let up. We figured it was a baby and Lee decided to try to sleep while I tossed and turned, searching for a comfortable position. An hour later I had not found any relief and my mind had run the gamut of possible complications: labour, infection, something I've never heard of... the usual. I woke Lee around 12h30 and said I wanted to call the midwives for their opinion, mentally preparing myself for a trip to Ottawa. The midwife said it did not sound like infection, since I had a specific moment wherein I began to feel the discomfort and that since there had not been any ups and downs it was inconsistent with labour. She suggested that a baby may have lodged itself somewhere strange, that I should go to the hospital if anything changed and that she would have her co-worker, K, come by in the morning. 

With a little bit of relief, but still filled with doubt, I revisited our discussion. If the baby is 'lodged' in an uncomfortable, low-lying area of my abdomen, then it may need gravity to help it out. Taking a page from my dear friend Christie's pregnancy solutions, I decided to try to get myself in an upside-down position. I had three pillows under my bottom and my feet up on our headboard: immediate relief! I took a Tylenol just before this and stayed up like that for about 20 minutes before shimmying myself back into a normal sleeping position. Needless to say it was a long night; I didn't get any sleep before 02h00. I was able to sleep on my back after that, but if I turned on my side the pain would occur on that side, but more fiercely. 

The following morning I was able to take my normal short shower and make it to my couch/station in the family room before the discomfort returned. I was propped up and whiny until K came by to check on me. She stayed for about 45 minutes discussing the pain and monitoring how it evolved while she was there. She talked about all sorts of delightful things relating to the pregnancy (ie. If they babies live for a few hours, do I allow EllaGrace to meet them?). She indicated that she believed the experience to be round ligament pain. I have had round ligament pain before, but it was more textbook, whereas this was more debilitating. Awful! She did hear both babies' healthy heartbeats and they were both moving. Later in the day I was fine when immobile but the pain was near excruciating if I tried to walk to the bathroom. I was packed with heating pads and consoled with back rubs until Lee left for Toronto and EllaGrace came home from daycare.

I know that my in-laws were fairly worried - my mother-in-law wished we would have also called the hospital (which we didn't for fear of too many opinions) and decided to take EllaGrace for the night and ensure that she and her spouse both had car seats ready so that they could get me to the Ottawa hospital and care for EllaGrace without trouble. And, to be fair, I did have a big emotional breakdown about the pain and my fear of Lee being away when my mother-in-law was here, so.... But, I wanted Lee to go to Toronto because we finally chose a couple of little things for the babies at Pottery Barn Kids that he could pick up. So, I told him to go shopping and hurry back - which he agreed was his priority! (Don't tell his boss). 

Anyways, I felt much better by bed time and have had very little discomfort today. Anything that I have felt has been when I was using abdominal muscles which is congruent with K's diagnosis. So, for now, I will stay on my couch with my fingers crossed and my head down. 

Facebook status of the day: Magical thinking is taking over me... logical me, where have you gone?

Friday, September 20, 2013

My Dark Side

So, I almost feel as though this post will need a disclaimer: Readers be aware, the following includes bleak, hopeless thinking, morbid humour, and too much personal information. 

I reached 20 weeks yesterday and instead of having that function as a milestone achieved, a halfway mark, I feel worse. My mood is lower.. I feel more down than I have in recent days. Getting this far was miracle enough, what are the chances I can really double it? Or more? And on top of that, the chances of two babies coming from this pregnancy seem so low, why have hope for both? Why think about the pregnancy as a 'twin' pregnancy when it is more like a complicated singleton pregnancy? I continue to feel movement (positive) but I am generally unable to tell who is moving. At the last ultrasound we were told the babies were transverse with both of their heads to my left. We also saw Baby B basically kicking Baby A in the head. Jokes about sibling rivalry were made, but it put a lot of doubt in my mind. If Baby B has so much range of motion, then no matter where I feel something, it could simply be Baby B. On top of that, I have been leaking daily. Basically sometime between 06h00 and 09h00 while I am sleeping I lose what I assume to be the amount of fluid accumulated in a 24 hour period. It is so disheartening every time it happens. Little Baby A must have been blocking the major area of the rupture a few weeks ago when I was able to retain just a little bit. But losing it regularly... my poor little Pea is unlikely to have the opportunity to work on those little lungs if the fluid is leaving every 24 hours. Between that - which in my mind is worse lately - and all the other strikes against the baby... it is so hard to have hope for it at all. 

I noticed yesterday that my mood was lower. My sister noticed too. I didn't attribute it to much, but it was upon reflection this morning that I started noticing other changes. For example, about 3 days after I ruptured in August Lee and I talked about taking a trip. I framed/tried to sell it to him in three different ways: 1) I will be turning 30 in November, why wouldn't we go somewhere with our daughter and celebrate the big 3-0? 2) The pregnancy will have ended by then and this can serve as a marker of us moving forward as a family and recognizing that we still have one another or 3) I've lost two children - it's my 'Dead Baby' trip. Who's going to say no to that? Anyways, Lee, the positive man that he is was only swayed by #1 and #2, but I have continued to make reference to my 'Dead Baby' trip nonetheless. In our first days back home and on bed rest I did lots of searching and put together some ideas for an extravagant, EllaGrace-friendly, somewhat affordable trip. I haven't actually looked at trips since then. Until yesterday. Yesterday I looked at time share opportunities (through my in-laws) and resorts... getaways.. ways to forget. The fact that I have restarted thinking about my 'Dead Baby' trip seems to be a clear reflection of how hopeless I am feeling. The statistics and the time we have to go for real viability is daunting, overwhelming and paralyzing. 

In the mean time, I (we) have been wrestling with names. We still have our original short list of names. We now have a list of names which are reflective of the journey of this pregnancy, whether or not the little Peas have long lives outside of the womb. I have a couple of unisex names. But, you know what? I cannot settle on names without knowing the actual sex. I come up with names that I think I like, but then I end up trying to put them into full names and they become gender specific. It seems like giving them names would be helpful to build an identity for each of them, to feel as if I know them.. but then, they just seem like arbitrary names that I might not have chosen had I had more information. Add that to the list of things outside of my control that I torture myself with.

Now that I have written out how I am feeling, I can hear friends and family reminding me that thinking positively is better for both the babies and I. I remind myself of the quote "where there is life, there is hope". I try to balance my thinking... at the very least distract myself... but you know what? That's damn hard. I believe that I have to prepare myself for whatever outcome. I have information in my email about a funeral home that will cremate my children's bodies and I have a friend designing and making an urn. That's a dark email account. My babies still have an awful prognosis. They do not have names. They do not even have an article of clothing or a toy to call their own. I am stalling and slow on all of my decisions - nothing is good enough or easy enough. I do not even get a break in my rest - my dreams are bad dreams, nightmares of having my children die, disappear or, on a good night, just your run-of-the-mill axe murderer dreams. 

So yes, I do need to balance my thinking. But yesterday and today, I have been unable to do so. And that too, is a part of this journey. Acknowledging the possible outcomes, trying to prepare myself for the unimaginable. Better days will come, or it will end. This is where I am at today.

Facebook status of the day: Stuck, powerless, alone... but honest

Thursday, September 19, 2013

My first pregnancy photographs

I have been nervous throughout this pregnancy and, to be fair, have spent most of the summer away from home and my husband. As a result I did not take any pregnancy photographs documenting my belly. Once I ruptured I decided against it - why would I want to remember how I looked in the worst days of my life? Over the past five weeks I have reconsidered this and today, at 20 week gestation, had the first photos of my belly taken. It is fun to compare my belly from a singleton pregnancy and my current pregnancy... see below.

                                          20 Weeks with EG       20 Weeks with 2 Peas

The Wrong Side of Mercy - 20 weeks gestation

Shortly after we made the decision to continue the pregnancy my partner, Lee, made a plea for mercy. He said that he hoped that we were shown mercy one way or another. Essentially, we agreed, that mercy would be to miscarry soon or to have a long, viable pregnancy which resulted in babies. (Would one live baby be considered mercy? I don't know).

Today I am 20 weeks pregnant. I can safely say that we both agree that we have passed the 'mercy mark' on the miscarriage/infection side. At this stage of pregnancy, if born the babies may live for a couple of hours before passing away in our arms. They will look like babies. And for me, it will not be a 'miscarriage', but then, perhaps that has been true for a while. Either way, 20 weeks seems to make a mark for me that infection or spontaneous labour is no longer merciful: I have waited to long, hoped to hard, begged too loudly and cried to hard for the loss of the pregnancy to be anything but cruel.

Sadly, we are a long way away from the other side of mercy. Viability is technically set to be 24 weeks gestation, but the statistics/anecdotal evidence I have read suggest that 26 weeks is really when the babies start to have a fighting chance (look at the stories at http://www.inkan.se/pprom/). Four or six weeks (or even better, longer) still seems so far away. I have already done five weeks of bed rest and it has been manageable but it just seems to me that the chances of infection or other problems just continue to grow as we move slowly along the gestational calendar.  

I have never been a patient person. This long, drawn-out, emotional rollercoaster is just killing me. I seem to be edging nearer and nearer to the line where hope is reasonable, and yet I am just not there yet. It's like an ever-moving target. 

Facebook Status: I'm begging you for mercy...