We're home now with Theo. This week has been very difficult. Having him home is infinitely better than the hospital, but being home with him now has come with it's own kind of sadness and anxiety. Home health people and nurses have been in and out and it's been good to have help, but it's just so different than it used to be. It feels strange having people in and out, having this equipment around, having all these new things in place; medicine schedule, feeding schedule, the maintenance of the iv antibiotic pump, operating the feeding pump, medicine bottles crowding the kitchen counter; and seeing my baby lying there, barely moving, hooked to tubes in our own home, all of this constantly reminds me of how painfully different our lives are now. And the pain that comes from thinking of all the things that will never be feels sometimes too much to bear--no more holding him close to feed (although I am still pumping as much breastmilk as I can), no more smiles and playful times, no watching him grow up, sit up, roll over, crawl around, walk. No trips to see the ocean for the first time, no King's Dominion, no swingset, no explaining why the sky is blue or cleaning up thrown food or messes from playing. I don't want to dwell on the sadness or feel sorry for myself, but sometimes I find it very difficult to remain in the present and not be pulled to the past or to a future that will never exist. I do love being able to hold him and take care of him myself. It is so nice not being at the hospital anymore. But I recognize that we are already in the grieving process, grieving a life we won't have with Theo, greiving the happiness we had before the tumor made itself known.
Theo is doing well. He seems more comfortable since our home health nurse Sherri noticed yesterday that he seemed in more pain when we move him around and she recommended we call and have his morphine adjusted, so now he gets doses three hours apart and seems more comfortable. We had been saying this for a while. It's nice to have our observatios validated by someone else.
He looks beautiful when he sleeps. If he didn't have the ng tube, he would look just like his old self. Sleeping with arms thrown out to the sides looking peaceful and content. We are doing our best to cope and stay as positive as we can, enjoying as much as we can the time we have with him. It's very hard to go to work, to leave Theo and Jamie--and I know Jamie feels the same way when he has to leave us to go to campus to teach.
Sorry I am not more upbeat today. I feel just so incredibly sad.
Thank you all for your continued love, support and prayers. People have asked what we need--it's so hard right now to even recognize what we need, much less ask for it. I know it has been helpful when people have helped clean the house, dropped off dinners or particilarly things we can keep in the freezer and unthaw for quick meals, gift certificates for foods. We could both use a massage. Neither of us ever wants to leave or would do that on our own, but if we had gift certificates we would use them. Little things people have done for us, such as dropping things by like foods or bottles of wine. It is very hard to think of things that we need or want. Money has been very helpful. We are in the process of opening a custodial account for him through Wachovia (where we both have accounts) so we will have that money set aside for bills, expenses the insurance won't pay (they pay about 80%), or future expenses. We will put all the money already so generously donated by our co-workers and friends and family into that account. Any other money we get for Theo will go into the account as well.
We have so much to get used to and to keep track of right now in taking care of Theo's needs that it's hard to focus on our own. Thank you all for everything you've done to help us. Please continue to think of us and send us prayers and good wishes.
I will check in soon.