Surgery Cancelled

Well I was so nervous the night before her surgery, that I barely got any sleep. I arranged for Kristin to take the kids all day so I could spend the whole day at the hospital with Lilah. Her surgery was scheduled for noon. I planned on being there for 10, so I could be with her for a couple hours before she had to go in. Her nurse said the neurosurgeons would be up to talk to me before she went in. They had started an IV to get her hydrated before surgery, and they had withheld food since 3 am. She was wide awake and fussy because she was so hungry. It's funny because this is the first time I really heard her cry. She seemed really pissed off! The neurosurgeon came in and says to me, we're here to see if Lilah is going to need her shunt surgery. I was wondering why he would say this, because I thought it was a definite thing. He felt her fontanelle (soft spot) for a brief couple seconds and says I think we can hold off, this is as normal a fontanelle as any I've ever felt. One of the ways they can tell if fluid is building up is by feeling the soft spot and the bones. I'm not exactly sure what they feel for, or how they tell but I guess they can. He went on to say how he compared the ultrasound from when I was pregnant with her to the cat scan they took the other day, and the ventricles were the same size, if not slightly smaller. He thought this was an indication that it might be slowly draining on its own. He also said that this didn't mean that she wouldn't eventually need a shunt, just not today. Any day, week, month that we can prolong the shunt will be better on her if she does end up needing surgery. She will be bigger and stronger, so the surgery won't be as dangerous for her. He told me the nurses would still be checking the daily head circumferences and if there is a change, they will reassess the situation and take it from there. I still have my doubts about this, and maybe he sensed that, because he said that he has been doing this for 32 years, and he knew a normal fontanelle when he felt one. Again, I hope to god they know what they're doing. After he left the neonatologist came in and apologized for all the ups and downs, and that I had come in all prepared and nothing happened. She also said they would talk to the other neurosurgeon to see if he felt the same way, not that she didn't trust this one, but just to make sure. This didn'r make me feel any better. They told her she can start her feeding back up, and if I wanted to I could feed her. I warmed up a bottle, and she sucked it right down. She was really hungry, the nurse couldn't believe how fast she drank it.

Another issue going on is that she has MRCA, which is basically a strain of staph infection that is resistant to broad spectrum antibiotics. It won't make her sick, it is just present in her body, so other people who have weakened immune systems, or are prone to catching MRSA, could catch it from her. The nurses and doctors have to take extra precautions, so they don't infect the other babies. Everytime they come in the room they have to put on a gown and gloves, and everytime they leave they have to take them off. They told me healthy adults rarely catch it, but told me I should wash my hands before I hold her and before I leave. I guess it's quite common in hospitals. I was worried at first, but at least it is nothing that will affect her. The last thing we need is some drug resistant infection to add into the mix.

Today I picked up Chevelle from Kristin's house. She slept over there last night. I had to go to Verizon to get a new phone, and met Josh over there. After that we took Chevelle out for Sushi, and went over to the hospital. It had been awhile since Chevelle had seen the baby, and she always complains that she never gets to spend time with Josh and I alone, so I thought this would be a nice treat for her. Whe we got there I went to walk in her room and it was empty. My heart jumped a little bit, but the nurse was right there and told me they moved her to another room. It has an extra little room before you walk in to hers. It's for extra protection because of the MRSA. I actually like this room better because it is more private. I asked the nurse how she was doing, and she said that her head circumference had gone up very little in the past couple days, compared to what it had gone up to before. She said the only thing she was concerned with was she was extremely sleepy all day and didn't seem to want to suck on her bottle. She was worried this might be a sign of fluid building up. They would check head circumference in the morning, and if there was a difference they would call in Dr. Aleen to see what he wanted to do. She than told me she was sure she would probaly need a shunt soon. I am so sick of the conflucting information. I am so frustrated with it. The visit ended great because I let Chevelle hold her. It was the first time she was allowed to, and you couldn't wipe the smile off her face! I know she is going to be an amazing sister, Lilah will be very lucky to have someone like her to be there and protect her. I hope she has a close relationship to her, like I have with my sisters. There is no other bond like it!