Trying not to freak out

People have recently asked me, "Do you have any other children?" I always answer, "Yes, we have identical twins. One is in heaven and the other is in the hospital." I usually end up answering some questions and giving a brief explanation of TTTS and update on Chloe's status. Solana has heard this many times and now gives her own version of the story when asked if she has brothers and sisters.

Hers goes something like, "Yes, I have twin sisters. But one had to get wings and go to heaven. And my other sister is at the doctor..." It's very sweet and I'm so proud of her for being such a big girl. She took the loss of Leila very hard at first. She was so excited to have twin sisters. I was completely unprepared for her sobbing outburst when we told her. All I could do was hold her and let her cry. She now accepts that her sister is with God and knows that we'll see her in heaven some day.

Solana made friends with two ladies at Lowe's today. We were waiting for Dave to finish talking to the appliance guy and they were waiting to be helped. She told them about the twins. The ladies turned to me for clarification and I told them about Chloe. One of the ladies asked if she's off the respirator and I answered, "No. Not yet but she's working on it." At this moment, the salesman arrived to help them. As they're getting up to walk away one of the women told me, "We also had twins. They were born at 25 weeks. One passed and the other came home with a trach. She died when she was two. I know it's hard. Good luck to your baby." And she walked...away.

My stomach was in my throat. I'm not sure how long I stood there staring after them. All I could think was - Chloe seems like she's been on the respirator forever! Much longer than other premies I've read or know about. Why was this woman here today to tell me that? Why did Chloe's nurse make an off-handed comment about how trach'd babies can drink from bottles today? I NEED to find another premie who's been on a respirator longer than her. I've been putting off the idea of tracheotemy because...well, I don't know of any and...it's just not going to happen. But what if... I told Dave a few minutes later, "This lady at Lowe's told me something really horrible and I'm freaked out about it." I knew he'd read my mood but I couldn't tell him in front of Solana. She's too smart.

I finally told him tonight and he said that lady shouldn't have told me that. We have no idea what their situation was and, although we have no idea what's in store for Chloe, we can't fret about that. I agree but. Still. I want to start searching blogs but I'm afraid I won't find any reassurance. I want to talk to the neonatologist and ask him. But I don't know what he'll say. I don't even know what I'd ask. "What are the chances that Chloe's lungs just won't heal?" "How bad off is she?" I need to stop. I need to stop. I can't. I can't. Yes, we'll handle whatever. But I don't want to. God help me.

I'm so so sorry for dumping this on you. Chloe will be fine. She will. Really.