The NICU Roller Coaster

Well, we don't know whether today would be called an up or down on a roller coaster, but which ever it was, today was not a very good day. Emma is fine and is thankfully oblivious to what's going on, but we are not. We thought today we were at the end of our roller coaster and coasting into the station. It's been 9 days since her last spinal tap and all seemed to be well. The doctors told us last week that if her ultrasound showed no change or a decrease in the size of her ventricles that she could come home with us this afternoon. All weekend, we felt her soft spot and asked about her head circumference to try to gauge her chances of actually coming home. All was stable and we saw no indications that she needed to stay any longer. The nurses and doctors were so hopeful that her discharge paperwork was all filled out and ready to be signed. Unfortunately, her ultrasound this morning showed that one of her ventricles had increased. The other stayed about the same. They determined that they needed to 'tap' her again today and do an ultrasound on Thursday. They are still hopeful that the taps are working and it will resolve itself, but we all were, of course, devastated. I had her coming home outfit ready to go, the nursery is perfect and her equipment is all set up. One of our nurses even gave us a 'goodie bag' of supplies last night to get us the through the first day or so. We know she will be fine and this will eventually all be over, but we just don't know when. Frustration and sadness are all that we can feel at this point. One of the most frustrating things is knowing that other than the ultrasounds and spinal taps, which take all of about an hour every few days, there isn't anything the nurses are doing that we can't do at home. The feed her, change her and take her temperature. We'd be happy to bring her in everyday for whatever she needed if it meant we could have her at home with us. We can't change or control the situation though, so we just have to regroup and make the best of it. I know we've asked for a lot of prayers and received even more than we've asked for, but please pray that this is just a bump in the road and she really will be home soon.