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?


  1. I missed not planning a shower. I hated buying tiny doll clothes to dress her in just in case she died. I missed the choice as to how to have a baby. And I was also hopeful that I wouldn't be able to hold her, because that would mean that she was being shipped down to the NICU.

    I am hoping so hard for you (and I am praying too, although I know that you are not religious). When I had her, and they pulled her out and whisked her to the next room, they came in and asked who had the long toes. It was the happiest moment of my life. It wasn't normal and I missed out on a lot, but I got to see a miracle.

    I pray that you get to see that miracle too. Even though I still get jealous at talk of normal childbirth or medicated or pumping or nursing (heck-even bottle feeding. She has a g-tube now), I feel that I am even luckier than women who had normal pregnancies because I got to see such a miracle. They did too, but mine was really a miracle. I pray that yours will be too.

  2. Noelle said it all so beautifully. I have hope for you and for Acorn.. what else is there? I wish that so many of us could have that normal pregnancy we crave. With all of my health/blood issues I know that is long gone.. but still I long for it.. for all of us.

  3. I don't know how we manage to hope again after many failures, but somehow we do. Our brain is hard wired for hope I think, it helps with survival, otherwise we would just lie down and perish of simple lack of will to live. If things don't work out, you will go on living, your brain will guide you. Somehow it just will. Rather be in the moment now, love what you can, and let the rest go. Your situation is incredibly hard. All you can do is survive it the best you can.

  4. I wish so much for you that you didn't have to endure any of this. If I could make this all go away for you, I would. I know that you wish you would just have a normal pregnancy, too. Hopefully at the end of all of this you have a perfectly healthy baby and that is your "normal".

    As for "hope" and how you get it back? I know my situation wasn't/isn't the same as yours but I got to the point after so much heartbreak and so much pain that I didn't have anything else left but to have hope. Some days I'm still beyond terrified but I'm usually able to somehow push it to the back of my mind because I'm so damn tired of being in pain. Again though, my situation is completely different than yours. (((HUGS)))

    From your posts, it sounds like you have glimmers of hope. I just think that it's tough right now because you're in limbo. You don't know what emotions to experience. Not knowing where you're headed makes it so much more difficult to cope.

  5. I'm none the wiser. I have no advice, just listening. Trying to understand. Hating how you have to go through this twice. While we've all had those blissful pregnancy feelings stripped from us (as BLMs) forever, the least you could have would be making your own lunch or walking to get the mail. Geesh. I'm so sorry. I sure hope that little baby is okay and he/she lives. I think everyone would wish that. Thinking about you and that little one a lot.

  6. Oh, Emily. I so wish I could give you an answer. I don't know how to balance being realistic and being hopeful. But part of me feels like if you don't have that hope, why bother? If you had no hope, you would have given up long ago. After my water broke, I and everyone else thought that I'd be one of those small percentages that made it through. I was somehow blindsided when it didn't pan out that way, even though I knew realistically it was a possibility. But I don't think I could have survived that time between water breaking and going into labor if I didn't think there was a chance. I don't know what I'm trying to say here. Maybe that you have to have hope, because that's all you have??? You have to hang onto that, because Acorn needs it and because you need it. I think. I don't know. Ugh. I hate this. I hate this for you.

  7. Quite awhile ago I talked to a woman who has lost four babies and asked her how she was able to go on and keep trying. Her answer really spoke to me: Because as hard as it is to keep trying and hoping, it's even harder to give up hope.

  8. Still hoping for you EVERY day ... even after our 'rainbow' died somehow we just kept going .. you do, the other choices are just too much. I hope you don't have to experience it and you get to bring Acorn home with you and one day - years from now this will all be a distant memmory...

  9. Hope finds its way back in. Trite but true, time is the real healer.
    A good outcome helps.
    I will say this as I wish someone had said it to me: you will survive.
    I hope you and acorn stay well.