Today started off wonderful. We slept in by accident and strolled into the hospital an hour later than we normally do. Luckily when we got here, Naya was doing about the same as we had left her last night. Still low on the pressers, vent settings were the same and blood pressure and stats were looking good. We stayed with her for awhile and then decided to go exploring with Ty and Toni. First we went to the La Brea tarpits. Very interesting but quite stinky. I thought Ty would love it but he wasn't very impressed.
Since the tarpits weren't a hit, we decided to take the drive up to the Griffith Park Observatory. I think this place should be a must see for anyone visiting LA. It was a beautiful drive, first through very fancy houses and then up the hill to wilderness. We had to walk a bit far from the observatory and hike up there but it was worth it. First thing you see is an amazing view of the Hollywood Sign. You just have to stop and take a few pictures of it. Here's Ty squishing it.
We then walked into the Observatory and it was amazing. First of all, admission is free. You are able to get amazing views of the city and mountains and the building itself is beautiful. The best part though was when we walked inside and saw that they had amazing exhibits and learning stations about space. Ty was so interested and excited to see everything, so that made me extremely happy. It was great being able to spend time with him doing something fun for a change. This past month has been incredibly rough on him and he's taken it like a champ. I'm very proud of my little man and his maturity during this time. Great kid.
When we got back to the hospital, we were all in good spirits. Until we went up to her room. About 10 minutes before we got back, Naya had desated and had to be taken off her vent and bagged to be brought back up. They were just finishing up xrays to try to figure out why. Scared the shit out of me and brought me crashing back to reality. They think she just had a plug in her line but who knows. Luckily, she was able to bounce back very quickly, which made me feel better. But, it did get my brain moving into terrible places. I'm so terrified of her a) never getting off this vent and b) the consequences that this illness is going to have on her long term. Is it going to effect her development? Her brain function? Is she going to be able to live a normal life? Is she going to be mentally handicapped? I am terrified that this is going to be the case. I don't know if I can handle that. Dan keeps telling me that babies are resilient and her brain has never been completely cut off of oxygen but I am still TERRIFIED. My head has just been racing with these thoughts and I can't stop them. This is excruciating. I keep telling myself that I can't worry about the future and I just have to take this day by day but it's hard not to think about it. This is not what you want for your children and there are no concrete answers about what's going to happen. I just wish she could get off this damn vent. I just want to will her lungs to heal. I want to command them to heal. Sometimes, I really don't know how much more I can take.
I know I am ranting but I do have to every once in awhile. This process is truly a roller coaster and my emotions are all over the place. I just want it to be over and for her to come home.
Your honesty is excruciating and heartfelt and thank you for sharing all that you feel. You have many folks here in SLO that are pulling and praying for Naya. Keep moving forward, know that you're loved.
ReplyDeleteGo Naya - you can do it!