Not much to update for Miss Neely today. Feels like we are in a sort of limbo. Her rash and oral aversion seem to have gotten worse. I know it's a bit of a roller-coaster, some good days, some bad. Just frustrating that we can't do more for her. I am meeting with her speech therapist today to go over the techniques for oral aversion. I wish Josh could be there.
I have not slept more than a few hours in the past 3 days. I'm exhausted by bedtime, but lately I just toss and turn. Not sure why (besides the obvious). I would say that it's because I'm stressed out and worried, but I don't feel the usual anxiety that goes with that. I just ... can't ... sleep! Depression setting in? Symptom of PTSD? I don't know, but I've got a full day ahead and I need all the energy and presence of mind I can muster.
I feel so bad for Josh. He wakes up around 3:45AM, leaves for work at 4:30AM, comes home at 3PM, and then has about 5 minutes to sit down before we drop Laney off with mom and head to the NICU. By the time we get there (traffic), it is after 4 and we only have a couple of hours before they close the NICU for shift change. Then we go to pick up Laney and are home by 8. This leaves him just enough time to eat something and pass out. Sometimes we wait until shift change ends (7:30) to spend more time with Neely and don't make it home until 10. I know Josh is exhausted, but he pushes himself not only for Neely, but also for me. He knows I need to spend time with her. Some days, I am in a cranky mood and he'll say, "oh Mommo ... you just need to see your baby". He's always right.
I think it will be easier when we bring her home. None of this driving all over the place stuff. Actually, we probably won't go anywhere for a looong time, unless you include doctor's appointments. I doubt we can or should take Neely out, even to the grocery store. I'm probably naive in thinking it will be easier. She needs to be attended to constantly, so that will be pretty rough when I go back to work. I guess that's normal baby stuff. However, a diaper change is way different than, "oh no, her ostomy bag is leaking" when it's 3AM.
I'm so excited to bring her home, but I've also been thinking about what this means for our family. She's going to be home and we're going to get closer and start to make all of these memories and then ... what if ... what if the worst case scenario happens? Laney is so young. How do you explain something like that to a little girl? Grandma will be the one spending the most time with her when I go back to work. I look at how close my mom is to Laney - I can't imagine how it will be if ...
Can't think like that, though. I guess you can, but it's pointless. We will never be prepared for that. Never.
Ay-yi-yi ... let's change the mood a bit. Today, the folks from our church sent some delicious cookies to the house (Tiff's Treats)! Also, someone at Josh's work gave him a present for Neely - a beautiful handknit blanket that I can't wait to put on Neely's bed (when we put her room back together). Then, to top it off, the people at Philips (his employer) sent out an email to everyone detailing the fundraisers they are working on for Neely. It is all so heartwarming and I can't explain how much it helps us in dealing with all of this. Every time we get a donation check, or someone makes us dinner, or we get a thoughtful email from friends, etc ... it feels like a "move that bus" moment from Extreme Makeover. We feel so blessed. Sometimes things start to feel so big and you feel like you're floating out there alone. Friends and family and kind strangers pull you back to Earth. It's amazing and we can't thank you enough.