Our first night there we stayed at a Crystal Inn, which turned out to be about 4 miles away (we thought it was closer when we booked the room), about 2am we get a call from the PICU, Kevlie had pulled her ET tube out (that's the one that goes down her throat and into her Trachea). Thankfully, the Respiratory Therapist was actually standing right next to her bed, looking at the monitor and was able to get her reintabated right away, with no complications. After that they decided to put her on a paralytic, to prevent her moving too much and pulling it out again.
I don't think I could ever fully describe what seeing her that way is like... every time we walked in and saw her there, not breathing on her own, not moving... I couldn't help but silently cry for my baby. My heart would break and I would feel this fear, that something might go wrong, that she might die and then I would think of my life without her. Half of me was reluctant to stay with her, being close to that pain is hard, it's scary. But, I know how much regret and how much more pain I would have if something did happen and even though it hurt, and was scary, I stayed. I explained it to Ryan one day we were there, I went though seeing my dad get sick, go through unbearable amounts of pain and pass away, but more often then not, I ran from seeing him that way. I went out with friends, I went to every activity I could think of, so I wouldn't have to see him hurting. And now, I regret that with all my heart. Seeing him sick and in pain would be worth those few more moments of spending time with him, because now (at least not for a while) I can't ask his opinion on how to raise my kids, or on Obama, or to see how much he loves smart phones. It would have been so much more worth it.
I think Ryan understood and we were able to better support each other while we waited for her to be well enough to wake up.
One of the scariest times was when she extabated herself while we were there. Again, though, the nurses and RT's who work there are amazing, and luckily she's easy to intabate. Ryan and I held our cool until it was all over, then we cried. And it turned out, Vaseline, which we had been putting on her lips to help them from getting dried out, breaks down the type of tape they use! After we figured that out, she didn't have any problems.
She was sedated for about two and a half days. And in that time we couldn't hold her. She woke up really well and did great while they extabtaed her (on purpose this time). The next day, we were transferred to 'the floor' which is where the non critical patients go. YAY! And later that night, about 7pm, they discharged us. We wanted to be home so badly that we drove home that night, we got in about 12 and were able to sleep with our baby for the first time in months without worrying about her breathing!
We are so lucky to be blessed with wonderful friends and family that care about us and our children. Thank you all, for your prayers, strength and good vibes. I really think they made a huge difference.