I’m sitting with Ramona now, she’s sleeping peacefully. I can’t believe that in a few short hours, just one week after open heart surgery, they are going to be removing the tube that helps her breathe. It’s a miracle!

Many people have asked me what the short and long-term plan/diagnosis/prognosis is for Ramona. I thought that now, on the brink of such an important step in her recovery, I’d share my understanding of where Ramona’s at right now.

Things are looking much better now for Ramona. The doctors seem quietly confident that she will be able to someday come home with us. Whether this would be weeks or months from now, we do not know. Although we’re not sure exactly what this would be like, she will probably require some heart medications and pain killers and a feeding tube for awhile. Hooray for taking her home! Before she can come home she will need to learn to suck again, and require physical and speech therapy. She will also need to demonstrate that she can weather periods of distress on her own and recover if she has a tet spell and turns blue. We feel hopeful.

The next step for Ramona would be a second open heart surgery when she is 6-12 months old. She will qualify for this surgery on if the increased flow to her pulmonary arteries causes them to expand and grow. Her branching arteries are now about 1.5-2mm, a “normal” child her age would have about a 7mm artery there. Think of it like this: a mechanical pencil is about 7mm wide, the lead is about 2mm. That’s a lot of growing! She wouldn’t have to get all the way back to normal but there would have to be a lot of growth there for the surgeons to agree to the procedure. They haven’t been able to give us an exact number, just that they would have to get “much bigger”. Some children will react to increased blood flow with growth, some not. When I asked the surgeon for a figure, he said “greater than 10%, less than 90%, let’s call it 50-50”. If she is not able to have the surgery then she would not be able to survive long-term.

If she’s able to have the second surgery then she would almost certainly qualify for a third open heart surgery between the ages of 2 and 4. After that her chance of survival is only slightly less than the general population. So, we’re hopeful. The big hurdle is coming up. Growing her arteries. Pray for her for that.

Getting her home feels like climbing Mount Everest, but in some ways we’re still at Base Camp One. I think she’s strong. I think she’s adaptable. I think she can do it.

Love, Jane.