At a loss.

Today is the first day I’ve been at home alone in a week and without JP for more than but 10 minutes.  I can’t say the past week has been the hardest in my life…..losing Mom keeps that top position, but this is definitely a close second.  I don’t really know how to carry on at this point.  I’m not sure where or how to begin.  I cry within an hour of waking.  I cry periodically through the day.  The sadness fills my heart, for the loss of our beautiful baby girl, for the loss of Mom.

Once again I’m at the point where I think it’s a miracle that we get up at all.  That  we eat, sleep, brush our teeth.  Each an accomplishment in its own right.  But I know I need to get back to work, that moping won’t help but I’m not sure how to get back at it. I have absolutely no motivation.  This loss is different too.  My body is still physically healing, and readjusting to my new non-pregnant status.  It’s both easier and harder now that she is gone.

I am grateful that we didn’t have to make the choice to terminate.  It was clear that our baby girl was not doing well, but yet still a shock to learn, almost two weeks ago now, that her little heart had stopped.  A week ago today she was born.  We spent time with her, we had her blessed and baptized and then cremated.  She is our small, winged little angel, who is I hope up ‘there’ with her Grandmother.  Mom so badly wanted to be a Grandma and it was the one thing that I could have given her but didn’t.  I still regret that so very much, even if it was largely out of my control.  She has her granddaughter now I hope.

Most of last week was about being scared of the physical stuff.  I was absolutely terrified of the induction.  I had no idea how my body would react and how it would feel to deliver.  If I would want to see her, if I could emotionally handle it.  It wasn’t as physically painful as I’d thought it would be, but then I was pretty medicated as well.  Things didn’t go as we’d hoped either.  I ended up having a d&c as well which I was really hoping to avoid.  That carried with it a whole bunch of fears too.  And just being in the hospital brought back terrible memories from Mom’s hospital stay.  That was the last time I spent time in a hospital, when we lost her.  Being wheeled down to the OR on a stretcher with the lights flashing as I sped down the hall took me right back to that time.  So much loss, so much sadness.  For so many different reasons.  This week, though I’m still healing physically, is more about the emotional part of this process.  The remembering, the grieving, the heart-hurting part of pregnancy loss.

I feel a complete mess.  At a complete loss for how to be, how to carry on, how to incorporate all of this sadness and grief in a way that I can be okay with it all.

Sea perspective.

I’ve always found the ocean to be healing.  Even in a tumultuous, stormy state, or perhaps even more so.  Like the ocean is railing against the universe for me, with its waves that smash explosively on the shoreline.  Looking out at the stormy seas last night I was comforted.  And reminded, by the sheer volume and size of the ocean, of how much smaller this is in the grand scheme of things.  It gave me a glimpse of the future perspective I might have looking back on this stormy time.  A perspective I’m unable to see now.  It gave me hope, if however small and fleeting.

The end is near?

We saw the doctor on Monday, feels like weeks ago now, and learned that what we suspected would happen, has indeed. Our baby has some lethal structural abnormalities typically associated with trisomy 18. We had been torturing ourselves looking at videos and photos, reading stories, of children who live or lived for days even years with trisomy 18. With our baby’s particular difficulties we’ve been told that he/she will likely pass away in the next few weeks. We took the news well, there were fewer tears this time, our hearts are already heavy and the truly shocking part is over. We knew things were bad, we just needed to know how bad they are exactly, and now we know.

And now we continue to wait. If our baby lets go on its own it will be slightly better for my body and infinitely better for our hearts. The harder it gets to find pants that fit the harder it gets in general. I used to enjoy reading the week-to-week pregnancy guides, learning how our first child is developing. I don’t read them anymore, our baby is developing as best as it can but certainly not according to the ‘normal’ schedule. I try to enjoy our baby for however short its life is but I’m still filled with so much sadness. Still so very down and sad about the turn of events for this pregnancy, for our first baby.

I feel lost. I feel like I’m at my breaking point. Hell, I feel like I’m well past it. I woke up this morning and couldn’t think of one thing to look forward. Somehow I still managed to propel myself out of bed. Everything we have on the horizon is bad. More doctor’s appointments, more discussing how/when this pregnancy will end. Great. And then I have to go through the whole process of miscarrying, I’m absolutely terrified. And then the holidays. I used to look forward to them and now, though I enjoy parts of them, I’m still dreading the whole season. I’ll even have to miss some of the things I DO enjoy because if I haven’t miscarried then we’ll be seeing doctors to see if our baby is still alive. And the holidays will be with Dad’s frickin girlfriend. Dreading it.

We’ve been talking about going away for a few weeks this winter, somewhere warm, somewhere fun but that was pre-diagnosis. When we were looking at closer places, places that a 5 month pregnant person could still do fun things. I can’t even see that far ahead at this point. Sure, I’ll likely be able to dive and surf but I’d given anything to be too pregnant to do anything.

And I know this is just a bad day, bad weeks, a ‘rough patch’ but man is it hard to feel this bad. To carry this much grief over losing my Mom and now the impending loss of our first child. I know we will get through this, it’s just the getting through part is so, so difficult.

Remembering.

Yesterday was Remembrance day and we took an hour to go downtown to the ceremony and have a moment of silence. Though my family hasn’t been touched very much by war I am grateful for the men and women who have made our country what it is today. It’s important to remember.

Amidst all that remembrance I spent some time remembering my Mom, not like I don’t everyday! Her birthday is fast approaching and I often catch myself thinking, ‘I need to send Mom a card’, then realizing I don’t.

Yesterday on the way home from the ceremony we walked across a lawn and it triggered a memory of walking in that same spot just over two years ago – I had just finished my first (and to date, ONLY) marathon, I was exhausted, emotional, but happy. Mom had been there at the finish line. I had know idea that two years later I’d be walking there again, Mom gone and facing a fatal diagnosis for our first baby. Terrible.  Sometimes I feel like I don’t have enough room in my heart for my grief.  I’m still grieving the loss of Mom, still so terribly sad about that.  I’ve even felt guilty in way to not be thinking as much about Mom as the baby has taken up so much of my mind and heart.  There is not enough room inside me for so much sadness.

Hello winter.

It’s undeniable, winter is here, or at least very close.  Hardly feels like there was any fall at all, things just went straight into winter.  It’s cold and rainy here today, JP left early to go surf, I couldn’t muster the energy as I don’t think I would have gone in and sitting on the beach in the rain and wind wouldn’t be much fun.  I know that surfing is important for JP, it’s his ‘me’ time, his meditation time, and I didn’t want to ruin that for him or make him cut it short b/c I was sitting in the rain.  I wanted a relaxed morning, and that’s just what I’m having though to be honest, I’m not sure what to do.  I have loads of work but I don’t really want to do it.

I feel quite down lately, which is no surprise.  I want to sit and watch tv, sleep too much and eat only bad things.  I don’t want to go out or be active though I know I should and that it would do me a world of good.  The upcoming week is scary.  I have an important job application to get in and then we’ll soon be back at the maternal-fetal medicine clinic for the detailed scan.  On the good news side of things, we’ve learned that our baby’s trisomy 18 is full, meaning that it’s not from a translocation and therefore not from our genetic makeups.  Small blessings.

I feel quiet, reflective but not wanting to be so.  The rain pours outside my window, the day still dark and grey despite the hour, a day that begs you to stay inside, watch a movie and eat something hearty.  While I don’t like the cold, somehow I find it a bit comforting.  It’s hard to believe last year how little time I spent here in the winter, really only a month, I’ve almost forgotten what it’s like and it’s nice to remember.  I *almost* want to go outside and experience the bracing wind I can see.

Better times.

In searching for something good to watch tonight I noticed that ‘Agent Cody Banks’ is on.  A terrible movie that we ended up watching in Dar es Salaam the night before our flight to Hoedspruit.  What a different time that was…..we’d just spent a wonderful morning snorkeling on Mafia Island, had an easy flight back to the mainland, a nice meal and had settled in to bed to rest up before our long day of travel through Joburg to Kruger.  What adventures we’d had and what amazing adventures lay ahead.  Hard to believe what we’re dealing with now.  But it’s a reminder of how quickly things can change, not only for the worse but most importantly, for the better.  I need to keep reminding myself of that.

Who knows where we’ll be 6 months from now?

Waiting again.

This time it’s for nature to take its course, which we hope will be swiftly and mercifully. The results are in and our baby has Trisomy 18 and a large cystic hygroma. Either on their own would be bad, together, their disastrous. We’ve been given a 0.01% chance of our baby being born alive.

We’re devastated. We love and very much want this baby but we don’t want it to suffer. Over the past two weeks we’ve learned more than we’d ever cared to about human genetics, procedures, percentages, defects, quality of life. Our baby has 3 doctors, one for each month it’s lived so far. It’s difficult, at a time like this,to know what to do. It’s impossible to be logical. I don’t want to lose this baby but the odds are stacked so heavily against us. I try to just enjoy this little one who seems to be hanging on despite the challenges its currently facing.

We are sad, angry, frustrated and very heavy hearted. JP has been such a wonderful and supportive husband and I am truly grateful for that. I am finally ‘home’ after two weeks away and I am so glad to be back in my comfort zone where I can drink tea and cry whenever I need to. JP cleaned the house, left notes and some gorgeous flowers. I feel so lucky in some ways and so, so unlucky in others.

We don’t know what to do with all this. It’s been hard to wrap our heads around it. To go from happy, healthy pregnant to a fatal diagnosis in less than a week is enough to do your head in. This issue is so emotional, personal and controversial. We are asking ourselves questions we’d never thought we’d every face.

We’ve told our families and our employers but no one else. It’s just so hard to deal with and the last thing we need is an audience.

We don’t want to ’say goodbye early’ so we’re just waiting. Again.

10-15% (Written Oct 27)

It isn’t much, but that’s what we’re holding on to right now.  10-15% chance this pregnancy will end favourably (i.e with healthy baby in arms).  I write this because I’ve been searching again, for others in my shoes.  It’s hard because we’re silent.  We haven’t told anyone our news because we were afraid something like this would happen.  It’s ironic at the time when you need support the most that you can’t reach out for it.  Or I guess, that we choose not to.  Our families have suffered enough heart breaks the last while that we’ve seen no sense in worrying them.  Even more so now that there actually IS something to worry about.

My history, for those other moms-to-be out there – 35, first pregnancy, 13 weeks, NT=5.6 mm, CRL measuring on the low end of the normal range for this stage.  We were offered CVS and had it and we’re now waiting.  Our odds are on the lower end though because the scan yesterday showed showed fluid around the head and farther down the back.  We tend to do well on low odds (Mom died when she had an 80% chance of survival, the chance of THIS happening was about 10%) so we’re trying to stay hopeful.  I’m trying not to get too stressed, not to cry.  Even if our baby is going to have a short life I want it to be a happy one.

But part of me wants to rail at the universe – WHY ME? WHY US? HOW MANY THINGS WON’T WORK OUT IN OUR LIVES?  HOW MUCH HEARTBREAK MUST WE ENDURE?????

The rational side of me knows that it’s just biology, that sh*t happens, that bad things happen to loads of people, that this will make us stronger, blah,blah,blah.

It still breaks my heart.

Waiting.

I’ve been away from home for almost a week but it feels like it’s been several.  The amount of worry and tears that have been shed have made it feel so much longer.  We’ve been through so much in such a short span of time.  It’s reminiscent of when Mom went into the hospital and was gone four short days later, what felt like an entire lifetime lived in between.  I can’t say it’s as bad, or as painful, but it ranks up there pretty high.  The pain is different, the loss not for what was but for what might never be.  Different but hard all the same.

I still have another week here, possibly more depending on how the test results come out.  I am grateful for the amazing healthcare we are able to receive here.  The healthcare professionals we’ve dealt with have been informative and supportive.   It still takes me away from my husband and what I consider my ‘real’ home.  At difficult times creature comforts make things easier and subsequently not having those, and particularly not having JP, makes it just a little bit harder. But I try to stay relaxed and calm, knowing that my stress will affect the baby and no matter how long he/she may be with us I want he/she to be comfortable.  And hope that he/she will be with us for a long, healthy lifetime.

I feel acutely homesick.  I long for the view of the ocean out our window, for the warmth of our bed and the creature comforts of our apartment.  Of knowing that JP will be home at the end of the day.  I truly miss it.  But I can do one more week.  I can do several more if need be.

CVS aftermath

I had CVS on Monday and though the doc got what he needed it took two passes and about 30 minutes – not fun. Aside from mild cramping I’ve felt fine until last night when I had some indications of miscarriage, very scary. But, I’ve been told by two doctors, my usual OBGYN and the specialist that unless things get worse there’s no need to worry.

But that’s all I do – worry that I’ll have caused a miscarriage and that I’ll lose our baby which could turn out to be healthy, worry that if I manage to keep it right now that I might miscarry later or that it might die. Worry, worry, worry. I feel like I don’t know my body anymore,I feel like a walking time bomb. I feel scared and I feel alone. I sit here at work, amongst people that have no idea I’m even pregnant. Only my husband knows and he’s 300 miles away. This is so very hard, and so very scary.