I am heading back to work tomorrow and incredibly nervous about it. I typically work 3 12-hour shifts (I've been on nights since August), but am easing my way back into things and just doing 2 8-hour day shifts this week. I'll hopefully do 4 next week and then rotate back and forth between 4 and 5 shifts/week to make my 36 hours ... it will be very strange working days and even stranger working more than 3 days a week. Plus, I am going to be on another unit, one I've never worked on so my anxiety level is through the roof. My job isn't one where if I feel sick or sad I can leave, I'd be stranding my patients and the other nurses ... so once I'm there, I'm pretty much locked in for the day. 8 hours is like a half day to me though, so my fingers are crossed it goes by quickly and without incident ...
We had another ultrasound on Monday with our precious little Toot. At our 12/19 ultrasound, she was measuring about 5 days behind, but on Monday, she was about 9 days behind and in some areas (belly, long bones) she was even further behind. She looked perfect to us though. It's bittersweet seeing her; I'm still amazed at how much she's grown since our first ultrasound and can't imagine how big she'd look if she was actually measuring 20 weeks! I am still comforted to hear her little heartbeat, but it's just so hard knowing she most likely won't be coming home with us.
We got the results of our full karyotype back, and she does indeed have full T18, which we expected. The good news is that it wasn't translocation T18 (which would affect future children). In some ways, it's a relief to officially know. I think I'd been holding out hope that it would be mosaic and that we'd get more time with her than we were intially led to believe. But, it certainly doesn't seem like that is the case, especially given her growth restriction. Every night I pray for guidance and strength and as much as I want nature to take it's course, I just cannot bring myself to pray that my daughter dies ... it seems so wrong. Yet, I don't know if I can do this for another (potential) 20 weeks. I feel so conflicted.
I haven't really felt her move yet, but there are times that I just know she is there. Other times, it doesn't feel like anything and those seem to be the easiest times to get through. It's almost like I can pretend that none of this is happening, yet I know that it is. I just keep thinking about when she does arrive in this world, however that may be, eventually she is going to die and we are going to have to let her go. How in the world are we going to do that? Even if she is born still or dies in utero and we deliver, I am going to hold her. But at some point, I'll need to let her go and it makes me cry just thinking about it. It shouldn't be this way, yet for us, it is. All the uncertainty surrounding this makes me so anxious and part of me just wants to have it happen now. But like I said, I just cannot bring myself to pray for her to die.
Every day of this is a struggle ... I can't imagine how it's going to feel when she is truly gone.
P.S. Allyson, thank you for your comment. I am so sorry about your son; my heart aches for you. Is there a way I can get in touch with you?
Good luck with work. I think the idea of going back is harder than actually going back...if that makes sense. I know when I was/am at home, I couldn't think of anything but Thomas, at least when you're at work you'll be doing things to somewhat take your mind off of it. Not to say you won't have a few moments where you feel the need to run to the bathroom and cry...I'm still doing that occassionally. I wish you the best of luck and just try your hardest to stay busy. You can reach me at allysondiala@yahoo.com and I'd love to talk to you.... it's almost strange really how I can relate so closely to everything you're feeling (such as maybe just wanting it to be over, I know exactly what that was like, but now that it really is over, I'd give anything to go back...not sure why, because it still hurt just knowing he wouldn't make it, but I think there were times when I allowed myself to believe that as long as he was inside me everything would be okay. I still couldn't even tell you how I'm really feeling, I'm still experiencing a lot of shock and confusion.
ReplyDeleteQuestion for you; were you or have you been very sick with this pregnancy? I was and was wondering if maybe possibly Thomas having T18 could have contributed to my sickness? Just curious and since you're going through this and work in the medical field, I thought you may have some insight...I was kind of left in the dark throughout the whole thing, while the doctors had a wonderful bedside manner, they weren't great at breaking things down to me in a way I could really understand and with only having taken a few medical related courses in school, I was basically clueless on T18 and the options that come along with it so I relied mostly on the internet (spefically the T18 foundation site)for answers. I was never even aware of mosiac or translocational T18 until I read your blog, could you elaborate on these a little for me? (Specfically the translocational T18, it sounds a little concerning. If you have the answers and the time, an e.mail would be great. Thanks, and by-the-way, have you felt her move yet? It's incredible! I miss those flutters and rumbles everyday and even now I find myself holding my stomach as if he's still there...if only.
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