Small Steps Forward

Thank you to each and every one of you who has been praying for, thinking about and asking about little Cailin. Dealing with this setback and now watching Caili struggle to get better has been the most difficult time of our lives. But, your thoughts and prayers have really helped us immensely. Knowing that so many people are pulling for Caili has made us feel like we aren't in this alone. And, if I can brag on Caili's behalf, it seems to us that there really are alot of people who have fallen for her and are emotionally invested in her journey. Again, that means so much to us and will to Caili some day too.

As for the update...I wish I had better news about where we are. Don't get me wrong, since last Friday, we have made improvements. They have been able to wean down on some of her medications and some of her vent settings. However, Caili still requires alot of support and isn't tolerating real food. Unfortunately, the doctors look at the Xrays of her lungs and confess that some areas look better but some look worse. It seems we haven't yet completely resolved the damage from the event that got us here (whatever that was) and even when we do, it appears that there will be additional damage from the events of the past 2 weeks. So, the big question is when will we get back to where we were before this all started, i.e. nasal cannula, feedings by mouth and heading home? Unfortunately, only time will tell.


After reading the previous paragraph you probably wouldn't believe that on Wednesday of this week they did try to extubate her (remove the tube) and put her on the CPAP. If you remember from before, the CPAP is a mask which provides continuous positive airway pressure and oxygen but is less invasive and forceful than a ventilator. The thought was maybe the tube down her throat was causing her to need more support. After giving us quite a scare, Caili did remember how to breathe on her own and was doing great for a few hours. But, after about 4 hours, Caili appeared to be really struggling. Watching her vitals, they realized she wasn't getting better but worse so they put her back on the jet ventilator. The Xray proved they were right. It appears that her right lung wasn't getting enough O2 so it essentially collapsed. Our little fighter was working twice as hard since she only had one lung working...I know, heartbreaking.


I think the essence of what Tim and I (and many other family and friends) are dealing with is just that...heartache. Caili is so innocent and doesn't deserve to be struggling so hard. I personally am really having a hard time these days. I got a real taste of what it is like to be a mom over the past month and I loved it. In my opinion, there really is nothing like the feeling of holding, feeding and comforting your own child. And now, not only are those pleasures gone, (temporarily I know) I also have to watch her struggle in pain.


Please keep us all in your thoughts and prayers as we struggle through these next few days of what should be a joyous holiday season.