Yesterday was rough. Ramona had her regularly scheduled cardiology follow-up and I just didn’t have a good feeling about it beforehand. Her cold is still lingering and during times of activity her feet and lips have been turning blue. Not enough to warrant any action, just enough to scare me. And although I am pretty sure it’s just the cold, it was hard not to wonder if it might be related to her cardiac status.

So they did the usual. Weight, height, blood pressure, pulse-ox and echo. She weighs now 21 lbs. 10 oz., is 29.5 inches long and blood pressure was 99/45. Her pulse-ox came out at 87%. The echo showed no aneurysm, thank God, and showed that there is flow going through the repaired area. Unfortunately they were not able to visualize the left pulmonary artery on the echo, meaning it was still very small, but they did see the right pulmonary artery and very roughly estimated it to be 4.5-5mm.

So here’s the plan: She will have her next follow-up in February. Then sometime in March we will do an angiogram, which is a catheter procedure that will require general anesthesia and an overnight hospital stay. Because her BPA’s have not shown significant growth the cardiologist seemed to feel it was unlikely that the next surgery would be a complete repair. Instead it might be possible to place a shunt to the LPA if it has grown enough or they might have to try something else, like a dilatation or unifocalization. They have not ruled out that her arteries might grow enough for the full repair someday, but it’s still not clear if that will be possible. And, as many of you already know, without that repair Ramona will not have a long-term future.

So I’ve been crying and crying and crying. I know that not all hope is lost. I know we’re blessed to have her now, no matter what happens next. I know she still has a lot of options. It’s just that between appointments I convince myself that everything is fine, that next time we go in we’ll get really good news, that the hardest times are already behind us. Maybe it’s just to get through my days, but I don’t often dwell on the seriousness of Ramona’s prognosis. But now I’m dwelling like crazy.

I’m just not ready to lose her. Everyday we spend together rewires places in my heart to love her and need her more and more. When I hold her in my arms at night and breathe in slowly, sharing her fast little breaths and kissing the top of her head, I feel a peace and warmth that I cannot imagine living without. God help me, I come undone just thinking about it.

When you’re in the heat of a crisis you don’t have time to consider all the small griefs and losses you’re bound to encounter in the aftermath. Adrenaline takes over and you just do what needs to be done. But what do you do when you’re crisis is chronic? When it’s bound to stretch out over years? Do you just keep doing what needs to be done, without pausing to consider that your life is turned upside down and nothing makes sense?

I’ve tried guarding my heart against feeling too much for Ramona. That was easy at the beginning when she was so introverted, so very sick. But as she learns and grows and reaches out to us, I just can’t do it. Yesterday she was playing with a little ball game that our friends the Sages sent for her birthday. Each time she would stretch up tall and plop the ball into the right hole, she would look up at me and slap her hand over her mouth as if to say “Oopsie!” How can you not let that in? But when you do you love her more and more and then you hurt more when you have to think of losing her. I guess that’s how it should be, but it’s just so heartbreaking.

Thanks for listening. Cardiology plus holidays plus PMS has got me pretty tweaked. Please continue to pray for peace and protection in our home. Here’s a shot of some finger painting Simon did last week. It sums up my mantra for today: Life Is Messy.

Love, Jane.