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?


  1. I like this philosophy.. Hope has let you down when you believed in it most, but love never has, right?

    I can't begin to imagine how frustrated you must be to be bed-ridden and unable to really "help" yourself. I really want the insurance company to pony-up for the at home care so you can rest more comfortably and relieve a lot of the stress I'm sure you're experiencing (and that of your family, too).

  2. Amazing, insightful post. Your last two paragraphs knocked the wind out of me, but in a good way. We (obviously) named our daughter Hope, as we felt that when she died, so did our hope. We gave her that name to try and keep the hope alive in ourselves, as we felt we needed a little bit of it to survive. It was still practically impossible to hold on to though, during her brother's pregnancy. You're right, love is what sustains us and keeps us going. Love is all we need. Funny you mention that song, as we played that after our wedding ceremony.
    But if you can't have hope for yourself (totally understandable) then we'll all hold it for you. Because a little bit can't hurt.

  3. It makes perfect sense to me and your post is so beautiful. I am sending you all my love right now.

    As you say, love never dies, nothing can break that.

    Keeping you all in my thoughts as always. xx

  4. that does make sense. it is beautiful. still thinking about you.

  5. I love love love what you said. I myself am on partial bedrest (obviously not to the degree that you are) and lose hope a alot. I still have over two weeks until viability for our little boy and I find myself losing hope too.

    Thank you for sharing your message of clinging to the emotion of love instead!

    Lots of love and prayers for you! xoxox

  6. I love what you have come up with and it does make so much sense. Thinking of you.

  7. I love your philosophy. Those last two paragraphs are so beautiful because they show how incredible a parents love for their child is.

  8. To have lost hope is heartbreaking to hear - but to have this unconditional love remaining for your Acorn is a wonderful, if not incredible thing indeed.
    A beautiful and insightful post thank you - keeping you in my thoughts and heart

  9. Complete sense! You can't help but love your baby from the first time you see that second line, but hope doesn't automatically tag along with love.

    I'll hope for you.

  10. I think this makes a lot of sense, and it sounds like it helps to think of it this way. I love what you write about love. I am hoping for you, though - hoping you get a nurse to be at the house with you, that you and Acorn make it through this.

  11. absolutely and I agree love does make it easier to carry on.
    so sorry you had to gain this perspective about how important your hope was for parents as a nicu nurse

  12. Dang. You're quite the thinker. I appreciate that thought process. I don't know if I have hope since my first baby died looking seemingly perfect. But I can say that love-- love for my husband I want so badly to share parenthood with, and love for Andrew and future babies will definitely get me through the tough times in pregnancy and (hopefully) beyond. I say THAT beyond part with little hope because I know no different than experiencing baby loss.

    Thanks for the thought. I appreciate the different perspectives. In the baby loss world of blogging, you're read most of it already. It's really all of the same, on repeat. We're all pretty much saying the same thing in different words because we have nothing else to say since our babies had no lives to talk about in great depth. We talk about our sadness, grief. That's all we can do. Nice to see something different.

    I'm sure it's really frustrating on so many levels. I think about you a lot throughout my day. Keep the love alive. That baby needs you.

  13. It makes perfect sense...

  14. All the way with love. Hope can only get you so far. Thinking of you and your babes always

  15. I LOVE that philosophy and you're SO right! That's exactly the difference. I would have never realized it before. I'm so glad you had that breakthrough and I hope it helps you mentally through the next days and weeks and months. Huge hugs!

  16. i love your philosophy on hope and love. it is sad to have lost hope but what better thing is there than love?

    i still have hope for you and acorn and i am still hoping that everything turns out well, but i am sending all the love i can muster your way!

  17. Such a wonderful insight.

    And such bravery. Bravery is being scared, and carrying on regardless. You are very brave.