Saturday, June 28, 2008

The great divide

The wonderful news is that Ray continues to thrive and do well and he is "graduating" to room C this morning. Way to go Ray! One step closer to coming home with momma and being an active member of our home life.

The not so great news is that Nora continues to struggle a bit. Per the night nurse, she had a few "bumps" last night. They did another full work up and lung x-ray ... presumably to check...again...for infection because her heart rate is up higher than they would like. Blood work came back negative. X-ray results are back and I should be able to get the update from the doc on today when I'm in. It just makes me cry because I wish there was more I could do for her.

And, life gets more complicated again because now I'm down to dividing my time 3 ways in 3 different locations instead of two. Ray and Nora were close enough in room B that even when I was "with" Ray, I felt she could feel my presence and hear my voice. It's just so hard to be so happy for Ray (and me in regards to Ray and how he's progressing) and not to worry that Nora just seems to be going backward or at least stalled. While your not supposed to compare...yeah right...almost no way to not. I haven't allowed myself to be worried about the future for either of the twins in terms of long term health issues or developmental delays because really their is no crystal ball, neither had any brain bleeds at all, and time is going to tell the tale so no point worrying now about some vague unknown that may or may not happen. After today's result, I feel myself starting to go there with Nora a bit. I'm telling myself not to get all worked up and this is just another new normal to get through for a bit. Ray has been the super star 29w NICU baby. Nora is the normal and average 29w NICU baby. So, I have been told (basically) and been telling myself, but you can bet I'm going to be asking for that reassurance again today about Nora. And, asking for reassurance on what is the best way to help her.

Oh, this is so hard sometimes. I feel like I had just gotten into a routine and was feeling good about things and now I'm not feeling so good. I'm so glad I got the early warning with my call to the night nurse so I have a bit of time for mental preparation rather than just showing up and find out like I did with the move from room A to room B (though that was different because it was a good/good/good thing and they both moved).

I don't know that I can keep myself away on Sunday. With this change, everything feels more uncertain again and not stable enough for me to allow myself a break. I'm taking a deep breath and telling myself to juts play it by ear and see how today goes when I can see them both. Talk to the staff directly and watch for the non-verbal clues that you pick up by just being there.

It's not as if I didn't know this was coming at some point, but I wasn't expecting it so soon.

1 comment:

Anonymous said...

(((((Deb)))))) That's really all I can say is that my heart is really going out to you. But I do think that the brain bleeds are a huge indicator of future problems. So if Nora doesn't have any, I think her prognosis is probably very, very good. But I know the pain of worry for your child. I personally think it's one of the most intense pains in the world. Hugs. HeidN (Jenny)