Abby and I took off from New Haven yesterday afternoon after spending a full day with Ellie for some time at home. It is still very hard to come home and face the 'nest' that we had made in anticipation of Eleanor coming home. It is sad to see the nursery all set up and dark.
It is even sadder for Abby and I to sit in our living room and realize that I had forgotten about Yaleand Eleanor for a minute there. Sometimes the hospital bubble seems like fantasy land and coming home separates us enough that I tune out. It isn't something that I am proud of but it happened.
We got a great email from a mom in AZ whose baby is short gut and she relayed her son's story to Abby which was a big help to both of us. What we are learning is that every case of short gut is a tiny bit different from every other one (where the gut is missing, how much is missing, how it was lost, etc), but there are similarities and hearing the story of this little boy made us more sure of what is ahead.
Sometimes it is easy for us (and the nurses and doctors, I think) to forget how much Ellie has in front of her in the coming months. Since she is so healthy other than her gut, you'd never suspect that she was sick or anticipated to be in the hospital for months to come.
I think that we make the preemie parents thankful that their kids will only be in the NICU for a few short weeks. When we say months (I use Labor Day as a reasonably hopeful target), the look on their faces is pure shock. I ahve had repeated conversations with a grandmother of a preemie who is early in the NICU acclimation period. She just can't believe what we have in front of us and kept telling me how brave and dtrong we are.
I felt like asking her: 'What else are we going to do? Roll up in a ball and hide? Run away to the hills and become hermits?'
She's our baby, duh.
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