Today Andy and I have decided to spend the night at home. We are driving ourselves crazy with worry these past 48 hours. Ramona is having her first real setbacks. The doctors have told us over and over again that every patient this sick has setbacks, but it’s just so hard after she’s been recovering so miraculously.

Ramona’s oxygen has been hovering in the high 60’s to high 70’s. They had to put her back on 1.5 liters of oxygen. She hasn’t been able to eat her full 93ml of formula every 3 hours by bottle, so they have been giving her the rest through her NG tube. She also had a fever today so they have sent out cultures and urine to check for infection. Overall she seems to be just not feeling very well. No smiles today yet. I get the sense that just the energy required to digest all the extra food they’re giving her is really stressing her system. But they can’t ease up on her nutrition because gaining weight and growing is mandatory if she’s going to qualify for the next surgery.

I think right now we’re just hoping that she can eat her quota and still keep her sats up. Also, I think both Andy and I are still just coming to terms with what it’s going to take to care for her at home. And the “wait and see” nature of her prognosis is also starting to sink in more.

A thought that has been giving me comfort today:

Paul Gauguin has a painting called “D’où venons nous? Que sommes nous? Où allons nous?”, which translates to “Where do we come from? What are we? Where are we going?”. These are the most profound questions around and the answers are unknowable. These are the mysteries of God. I am going to try and ponder these questions equally with reverence and gratitude. I am going to try and not worry overly about the third question. I am going to enjoy our time with Ramona and do my best to stay in the moment.

I know the site was down for awhile today, I hope it didn’t cause anyone too much worry…thanks for your thoughts and prayers,