Surgey Scheduled

They have decided to insert a VP shunt in Lilah' head. The EVD didn't work, and the fluid is not draining on it's own, so this is the next step. Backing up a little bit, Tuesday I was frustrated because I was supposed to go see the baby, and just as I was leaving, my Jeep woudn't start. One of the kids had left the light on and the battery died. No one was around to give me a jump and Josh wasn't expected home until around 10 that night. I have managed to make it to the hospital every day since she was born, and I was feeling like if I didn't see her, I was a bad mother somehow. Luckily Kristin got out of school early and drove me to the hospital at about 9 at night. Josh who was crackfilling, met me over there. I had mentioned in a previous blog how they had started bottle feeding, which didn't go to well, but when I arrived they asked me if I wanted to feed her a bottle, and she drank half of it. The OT (occupational therapist) had been working with her and she had been feeding really well, taking whole and half bottles. So all in all the night ended fabulously because I got to feed her a bottle for the first time!

The next day I had plans to meet Randy and his mother Corina (Josh's aunt)over at the hospital so Corina could see Lilah. I was also hoping on hearing some news about the plan of action for Lilah's hydrocephalus. The nurse said that they were planning on giving her a cat scan the following day, and that they would probably get her on the schedule for surgery. I asked if Allen had been in, and she said she would check for me. She talked to the neonatologist who came in and told me that she had seen Allen but they hadn't dicussed Lilah (rolls eyes), so she said she would give him a buzz at home. She came in a few moments later and pretty much told me the same thing the nurse did, about the planned cat scan and all. I was able to feed her another bottle, and then I went to dinner with Randy, Ryan, Corina, and Des at Silly's. I had my first taste of fried pickles yum yum!

So today it was a beautiful day out and I took the kids to Deering Oaks Park. Afterwards I dropped them all off at Kat's house, and headed over to Maine Med. When I arrived I could definately tell that her head looked larger. Also she looked very pale and sickly to me and was very fussy. I was really worried at this point, because I'm thinking to myself how can they let her sit here with this fluid bulding up and not do anything about it. A new nurse I had never seen before came in and said they had done the cat scan, but didn't know the results because Dr. Allen had to go over them. They would call me as soon as they knew anything. She said she had a fairly good day, but her oxygen levels were all over the place and she had a pretty significant de-sat the previous night. She then asked if I wanted to hold her, and while I was, the anesthegioloist (sp?) came in with a consent form for surgery tomorrow. He's like as you know she is having her shunt installed tomorrow, and I said umm no I didn't know this, and he said well she is on the schedule for 12:45, so he went over the risks and all that. It's general anesthesia and the risks are no different for a baby than an adult. He said they will have to insert a breathing tube and afterwards she might be a little sleepy and cranky. They will give her medicine for pain if she needs it. When the nurse came back in to put Lilah back I told her she was scheduled for surgery and she was surprised, she had no idea. I have to tell you Maine Med is amazing for the most part, but sometimes they seem a little disorganized and it can be frustrating at times. I am just so happy that they are going to do it tomorrow instead of waiting, I was so nervous about further brain damage. Josh kept telling me not to worry, that I had to trust that the docs know what they're doing, but you hear such bad horror stories all the time, that you have to wonder if they're making the right decisions. When I arrved home my phone rang and it was a neurosurgeon who was going to be assisting in her operation he explained the procedure, which he called "straight-forward", said it would only take about an hour. He said this is hopefully a permanent solution, but shunts are notorious for complicatons, and at her young age problems are inevitable, the biggest risk being infection. It is not a question of if it will fail or be infected, it is a question of when. For someone like me, with anxiety problems this is not a good thing. I can just see myself rushing her to the ER for every little fever, thinking it's infected. Or if she seems tired and listless, I know I will automatically think it is failing and the fluid is building up. I can also see myself taking daily head circumferences to see if there is any change in head size. I know many parents of children with hydro go through this, but a lot of them say that when something actually does happen you can tell how different it is from the little things that you spend your time worrying about. I will post tomorrow night after surgery. Wish her luck!