Riker seems stronger and healthier every day :) We had a wonderful visit and she's smiling and laughing now. The staff at the hospital all tell me what a happy and beautiful baby she is. They don't believe me when I tell them all she did was cry when she was home. It is so nice to see her so content. It makes me wonder/worry that the cancer was eating at her ever since she was born. I hate to think my baby was in pain that long.
I am getting more comfortable in the hospital and am finding ways to better advocate for my daughter. The breastfeeding is going well and I've requested that the nurses try to bottle feed at least once per day. I'd like to eventually get her off the NG tube and cannot be there 24/7 to breastfeed. The nurse seemed uncertian but I was able to get comfirmation from the doctor that they should be trying. It feels good to be on the same page as the doctors :)
Now that we've settled in, I'm becoming more concerned about Riker's development and her ability to hit her milestones. It's scarey to think that she may spend her 1st birthday in the hospital and she hasn't even learned to roll over yet. Obviously, she will be a bit behind with all of the chemo and sickness she'll experience but my poor baby hasn't even learned to roll over yet!
Her room is 12x12 at best and the floor is cold and hard. In her bed, they have her sleeping in her boppy pillow all propped up so that she cannot move. The only piece of baby furniture she has is a papasan swing. How is she going to develop there?
At my request, the doctors met today to work on a plan that includes a physical therapist, an occupational therapist and a speech therapist. I look forward to discussing their plan tomorrow. I am excited to see Riker be as normal as possible in the impossibly abnormal enviroment she will call home for so long.
Unfortunately, all of this is really taking its toll on me. Each day I become more and more exhausted. My body aches and I am scared to death I'm going to get sick. Juggling my family at home and my baby almost an hour away in the hospital is more difficult than I could have imagined. I am rarely getting more than 4 hours of sleep most nights and I find my eyes heavy during the long drive back and forth. Something has to give soon - I need to find some time for rest. As time goes on, I hope I can find a more reasonable balance. I don't know how I'll go back to work when the time comes.