July 3

Justin is visiting her alone today. It worked out simplest that way, and gives me a taste of his own vicarious enjoyment of my visits. Three days without being with her.... can I make it??? At least Tuesday morning I can be there fresh when the doors open. She is now officially in the long-term care group! Justin called me on Skype this morning so I could at least look at her and talk to her.... and she smiled as soon as she heard my voice, multiple times, and looked around like she was trying to find me, aww.

I'm overjoyed! Dr Downey is raising her to full feeds over the next week, then slowly compressing feeds to larger amounts over shorter time rather than continuous pumping of a steady amount, then bullous (intermittent) feeds and (gasp!) then perhaps removing her picc line!!!! This will mean her stomach will stretch to where it can handle normal infant meals. This is a MAJOR change from Dr. Black's approach. It means ditching the TPN that has had us worried for her liver. It could mean freedom for her left arm at long last. She may not even need a picc line for her surgery stuff, they said. Wow. I asked Justin if he wishes we had done this change sooner, but he reassured me that he thinks we did things in the right way, at the right time, slowly and carefully as it should be, and I realized to my surprised relief, that I agree.

Her Esophagram will be Wednesday, she will be fully sedated for it which means a break from food for a few hours ahead of the test. Looking forward to the results, wondering how much she has grown. Even if they could perhaps do the repair right away, unless the two ends are practically "kissing" he will still give her a few more weeks to grow before doing the surgery. He'll remove the G Tube to press upward from inside, and watch on a video monitor. She might get a "button" G tube, another step toward home and a more normal life. This G tube button can be easily disconnected from the pump and snapped shut for playtime, baths, etc. when desired. I'm getting more excited as things progress and the days pass, home is getting closer, I can feel it--- as much as it sounds scary in one sense to imagine mixing our busy crazy home life with her special needs, little by little each hurdle is looking smaller and closer. I "sucked it up" as they say, and changed her G tube dressing myself on Friday, a task that has always scared me-- what is up with all these moms who say a G tube is no big deal? For me it is. I just keep telling myself, this thing is giving her life, it's ok, it's better than ok, thank God for it. It struck me recently that this whole experience is like a second pregnancy. At the end she'll finally come home, and nothing will ever be the same. But we'll snuggle and rock and sing and play, and Gideon, we, and her siblings will fawn over her every move. The G tube will become part of our normal every day life, and then one day we'll ditch it, and she'll have only scars to remember all of this by. Her sterile world forgotten, she'll live surrounded by love, wake to the smiles of her parents, drink in the sounds of birds and children playing, feel the sunshine, the scents of outdoors. I can almost taste it.