Where to begin…
Still feels like this isn’t real, or rather it’s not supposed to be real. Maybe I haven’t quite reached that stage of acceptance but I still hope that I will wake soon from this nightmare and be at home with Reth and our girls snuggled up on the couch and enjoying life.
The reality is that I sit here late at night in our hotel room while Olivia sleeps and Reth watches over Chloe at Blythedale. Home seems so far and out of reach and, in all honestly, almost non-existent since I won’t be able to call a place home until I have my family all together. It’s just not the same, it feels empty.
We have set up camp here in Westchester over the past few days. After a weekend of going back and forth, my parents have been kind enough to set us up in a hotel nearby the hospital so that we can all be together as Chloe settles into her new environment. Reth has been fortunate enough to be given this week off work so that he can be part of Chloe’s initial assessments and help us through this transition. We have also pulled Olivia from school for the week so that she can see her sister and be with me as much as possible. The plan after this week will be for me to stay with Chloe during the week and have Reth and Olivia visit on the weekends. It will be extremely difficult for us to go a week without being together and we dread the moment already but it is the best we can do for our family and will find a way to bear it and make it work.
Blythedale has obviously been a difficult transition for us. New York Presbyterian Hospital-Cornell was an amazing place for Chloe and our family. The PICU team took care of each and every one of us and we had finally come to a point where we felt comfortable leaving Chloe for short periods of time. Though we know it will take time to adjust to our new settings, the past few days here have been a bit difficult. There was no one to greet and welcome us when I first walked in with Chloe, we ended up in an older wing we didn’t see on our tour, in a room that vibrated from the construction that is taking place, we had to fight for the right formula to feed her, no one knew her or me, and we felt alone.
After a few changes and few days to take everything in, we are in a better place than where we started. On Friday, we met Chloe’s therapists (physical, occupational, speech and feeding) and infant stimulation teachers. Chloe’s weekdays will include a morning and afternoon session of school and daily therapy sessions (unfortunately, there is no activity on the weekends). Throughout the day, Chloe is massaged, stimulated and worked. She is holding strong and doing well. Even just being here for a few days, we have seen Chloe moving around a bit more. She is able to tolerate lying on her side with much more ease, and we have laid her on her belly as well. We even saw the slightest lifts of her head as she is pushed to her limit with her teacher and therapists. They have done amazing things with her in just a few days and we notice slight differences in her body. It will be an exhausting long road but as we watch her with her teacher and therapists, we see and pray that we will witness her physical and mental strength slowly, but surely, improve.
Thank you for being there for us as we enter another phase. We appreciate all your emails and phone calls. Thank you for giving us this time to settle in. We know many of you have been anxiously waiting to hear from us and get an update, so we appreciate your patience as we find our way. We will continue to update the blog as much as we can and we thank you for your positive thoughts and prayers.
With love,
Michelle, Reth, Olivia and Chloe
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