Halloween - 23 days

Chloe's first Halloween! Not what we expected with being in the hospital, but very nice nonetheless. She and her sister Olivia were the two cutest pirates! We will post pics as soon as we download them from our camera. Olivia enjoyed her Halloween on Long Island at her grandparents house with Michelle. I was told that she claimed quite the booty of candy!

So continues our emotional roller coaster. This morning we were told by Chloe's attending physician that most likely the EEG monitor that Chloe wears would be discontinued because she has not had any seizures in almost 48 hours, only to be told later in the afternoon by her neurologist that she had about two seizures an hour from 9am - 4pm. It feels like every time we get up, we get knocked down again. We can only imagine what Chloe is going through and the incredible strength it must take to keep fighting. We also continue to work with Chloe's ability to take a bottle. She has the ability to swallow but does not remember how to suck from the bottle. The team is willing to give her to the end of next week to relearn this ability or at least show much improvement. We were told that if she is unable to take the bottle we should consider the alternative of a feeding tube being placed in her stomach. Of course, we want to avoid another surgery, but with every day that passes in the PICU, her rehabilitation is delayed. Until that day comes when we will be faced with more difficult decisions, we will continue to work with the speech therapist in hopes that Chloe will regain her ability to feed. Michelle and I maintain our bedside vigilance and will do so until we bring our baby home.

Olivia continues to visit Chloe daily and looks forward to each and every visit. We would be totally naive in saying that Olivia is not affected by what has transpired in the last three weeks. Michelle and I have noticed changes in her behavior and yes, it is to be expected with all that has happened - but we do have concerns and will be watching her closely. We struggle to keep Olivia's schedule as routine as possible - going to school and weekends are somewhat easy, it is the home environment where we find the most difficulty. Michelle and I have not been home together to have dinner, or put Olivia to bed in the past three weeks. Saying goodnight to Olivia usually consists of one of us holding the phone to her ear to say goodnight to whomever is staying at the hospital that night. The one constant we do have in Olivia's schedule is her grandparents. Michelle's parents have been absolutely wonderful in helping us with Olivia. They routinely stay overnight to help put Olivia to sleep, take her to school in the morning and pick her up in the afternoon. We are very grateful for all the support and love they provide.

In one of my previous posts, I had mentioned the amazing people who work in the hospital but I also want to add that we have met and befriended some amazing families. They too, stand vigil over their loved one. In three weeks we have shared our highs and lows with them. We have seen their tears of sadness as well as their tears of joy. To those families, we pray that you continue to have the strength to watch over and care for your beloved. And we thank you from one parent to another for listening and offering your gentle nods of support.

Much love and thanks,

Rethier, Michelle, Olivia & Chloe