good days and bad days

 We both realize there will be good days and bad days through this process and as the bad days happen we'll learn to really cherish the good days.  Right now, we're just trying to handle a day at a time waking up not knowing which type of day it will be.

  Yesterday was a good day.  We found out during our morning visit that Lucy gained 3 ounces, which brings her up to 3 pounds and 8 ounces.  She is really packing on the weight.  It will probably be the only time she'll hear this with such excitement.  The neonatalogists and cardiologist did their rounds while we were there and both said Lucy is very stable.  It looks like the hybrid procedure will happen in a week or so, but like everything else we don't have a specific date.

  At our night appointment, wait for it........I got to change her diaper!  Yes, you read that right!
Those are my hands below.

While everything in the picture looks calm, it got a little crazy about 30 seconds later.  Lucy for sure likes to be left alone and boy does she have some strong legs.  Mike had to hold her left leg because I couldn't get the diaper up with one hand as I was using part of my other to hold her right leg.  Then add all the bells and whistles she's has attached to her and it gets a little complicated.  I did finally get the diaper on and in place.  Mike will get to do it next time.  All in all a fabulous day for us.

Today was a different story, we were planning to do another extended visit where we do an hour then run some errands and get lunch and come back for another hour before we head home.  The hospital drop off was a nightmare, I guess with free valet you have to expect that.  We get up to the NICU and are all scrubbed in and just said hi to Lucy when our nurse comes over to tell us that they just had twins sent in and will be doing a sterile procedure and we would need to leave for at least 1/2 hour.  So we turned around and waded through the hospital drop off to go get lunch.  By the time we got to lunch we had wasted an hour.  We finally got back there Lucy seemed over stimulated due to all the commotion with the other babies, so we decided to stay for an hour and then let her get some peace and quiet.

Add to this, I spoke with the social worker about the Ronald McDonald house and we found out that a room is not first come first serve.  Rooms are assigned not only based on how long you have been on the waiting list but how far away you live from the hospital.  So it's possible we don't get a room if another family lives farther away.  As of now there are four families on the waiting list and no rooms to become availble in the next week or so.  If surgery is scheduled we will have to book a hotel to be close.  What a bummer!  We'll just have to keep praying and leave it all in the hands of the man above.