Avie is 13 days old now... I can't believe nearly two weeks have passed since her arrival into this world. And what a world she is in.
Still in the NICU and only experiencing her small box of a room so far, I have to remind myself that she won't remember these things once I get her home. The most excitement she has gotten is when she was wheeled down to get an x-ray. I watched her eyes as they caught the light from the passing windows. She was enthralled with the change of scenery... until we had to hold her down on the x-ray machine. I hated that moment, but I didn't want to cry in front of the technicians and nurses. I knew Avie would want to feel my strength, not my sorrow.
Things have moved slow and steady for her the last 9 days. She has been taken off the IV and allowed to eat. She gets what little breast milk I can provide and formula substitution for the rest with some rice cereal mixed in for added bulk. The rice cereal is supposed to prevent her from 'dumping' all the food into her ostomy bag. Dumping means that everything going in is coming out, and that she isn't absorbing the nutrients. She also gets enzymes mixed with applesauce (the enzymes will be something she needs for the rest of her life. It's obvious that the Cystic Fibrosis has caused issues in her GI tract... only the future will tell if she has this much trouble with her lungs, too). Big food for such a small girl!
A small girl who is so brave.
After her last x-ray, the surgeon came in to talk to me. He said she was doing well and that the x-ray showed that the distal (lower) bowel has started to open up and that the treatments are breaking down the meconium blockage. While we were still waiting for lots of poopie diapers to tell us that the blockage had completely cleared, it seemed like the surgeon was pretty satisfied so far. At this point, she had gotten a few little 'nuggets' out into her diaper.
The surgeon gave me an approximate timeframe of when we might expect her second surgery to be discussed... which would be next week. It made me feel happy to hear him say that it could potentially be so soon. The thought of having her home gives me insane joy. I daydream about waking up to her cries in the middle of the night and bouncing her around the house. Dressing her in her adorable clothes and not accomplishing a thing all day. Lord, just make it so!
Then I have a complete meltdown.
I am sure it's hormones. I've been told by the nurses that it happens all the time and every new Mom cries, whether the baby is home or not. I think I just hate that she is still at the hospital, and I'm not sure when she will be home where she belongs... regardless of what the surgeon says. I see her every day. The whole staff knows me and they are all so sweet. They check in on Avie periodically and tell me how beautiful she is. I am sure they are telling the truth (because she is absolutely adorable) but I also think they are trying to keep my spirits up. Nobody wants me to break again, especially me.
While next week still seems so far away, I know I just have to keep my head up and stay strong for her. I have to focus on the positive improvements she has made... and while that can be hard most days, today should be different...