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?
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?