We are very thankful that it has gone well (for the most part), but very weary of long days in the hospital, being separated from each other, and just the continuing enormity of our situation. We've spent 1/4 of the last 4 months at Children's Hospital and our house looks like the ICU. Home health came today to teach me how to use and care for her feeding pump and tube. The very hardest days for me are always when we get new medical equipment and then bring her home from the hospital. It's a mix of total exhaustion and sheer panic, as in "how in the @#$* am I going to be able to do all this?" I know other families do it, but don't know how. I can't hardly imagine that things will ever level off to normal, and the honest truth is I don't want any of this to be normal for us.
We have come to the conclusion that the whole 'God does not give us more than we can handle' is not applicable here. I have so long ago passed the point of what I can handle, that I can't even remember where it was. Clearly, the Lord has given us far more than we can manage alone--so that we will rely on Him. Thankfully, He continues to sustain us through each day.
I keep forgetting my camera, but Lilah looks well-pale and with 6 million wires/bandages (actually, 15), but good considering all she's been through. Despite valiant attempts by all her caregivers, she is not giving up any smiles yet! Thanks to her Dad's persistent insistence :), her pain is well managed and she is resting peacefully....like an angel.