In the Little Room....5 Days

Tomorrow we head to KY for a preop visit with anesthesia. Never been to one of those before, so it will be a new experience. I hope they don't need anything besides my brain power. (That makes me laugh just typing and rereading it.) My sleep is fitful and full of dreams of surgery. Not necessarily bad dreams just unorganized surgery dreams. Hmph. Last night I couldn't help but think back to the beginning. Some days it feels like nothing really has changed. Still waiting and watching.

It has been my experience, having worked in healthcare, that it is never "good" to be taken to the little room. You know, the room where they take a family in the ER when a patient has died or the news is so grave they want you isolated. It's the same way in the NICU. They encourage you, or they did us at least, to keep a diary of our stay there. While I am a journal-er, I just couldn't bring myself to rehash everything in my room alone each night. I didn't want to be able to go back and look on paper how distraught I was. How alone. So, instead, I wrote letters to Lillian. I'm a little unsure about sharing this, but hey, take a leap....here is the letter I wrote the day things started taking a talespin.

Shorty after she returned from the sleep study, she began to show signs of distress, by seven or eight oclock she was back on a vent and still teetering. Matt and I stayed with her until a relatively good blood gas came back. It was the first night I went home. Although they procured a room for me, I just could not bear the thought of staying alone. Coming home, how painful. The first time to step into her room that my sister and kids lovingly prepared. The emotion of wondering if Lillian would ever even get to enjoy her sweet little bassinet and all her precious clothes neatly folded in her drawer or wear the diapers that lay stacked in the diaper stacker. It was just overwhelmingly difficult. We headed back up to Riley the next day only to be met at the bedside by the doctors telling us we needed to "sit down and talk". Enter, the little room. I so clearly remember the team-head doc, nurse practitioner, social worker, Lillian's nurse and maybe two other people. It is true what they say about hearing a pin drop. Everyone sat quietly as the doctor unloaded the situation. It was like air raid sirens. Like the bombs dropping one at a time. Initially I tried to write things down, but soon was just too overcome. I kept looking from the doctor to Matt. I remember there were few words afterwards...like "what can we do to help you" and "do you have any questions" and then they all filed out so quickly it was almost like a cartoon. We were alone and I think it was a moment before I realized Matt was crying with his head in his hands. We took turns like that for some time. Trying to fathom how we would talk to the kids and just soaking in everything we had heard, heart surgery, tracheostomy, mortality rate....chromosome problems. I'm not sure how long we were in the little room. I guess it was a while. The next thing I know the nurse was back saying our pastor was there and as he entered we were freshly overcome. It was the man who had helped save our marriage and been there for us and continues to be there for us today, although we attend a different church. I think we told him what we knew and the first thing he did was open his Bible to Psalms 139 and he read to us. He prayed with us and comforted us in the little room. It was after he left that we were able to pull ourselves together to face what would come. A lot of things happened in the little room and I don't think I'll ever forget the little room.

Five more days and hopefully a lifetime of no more of the little room.

PS- puking continues, but some better.