Today, Andy and I consented to Ramona’s next surgery. It will be on Friday at 7:30am.

Their plan is to resect the aneurysm, meaning they will cut it open and remove the ballooning section. They will then reconstruct the RVOT patch (that’s right ventricular outflow tract patch for those keeping score at home) and redo it with a gortex material. They will also place a shunt from the RPA (right branching pulmonary artery) to one of the major arteries coming off of the aorta.

They found upon closer examination that the RPA had grown about 1mm, just enough to allow them to attempt the shunt. The LPA is still too small to visualise by CT. But this is good news as she will hopefully get some improvement in her oxygenating power.

There are a few risks they discussed with us: With any shunt there is a risk of clotting and Ramona would need to be on blood thinners from now on, this would hopefully be just aspirin. Also, they seem concerned about the risk that Ramona’s aneurysm might burst while they are opening her chest. It is about the size of a nickel and right against her sternum. Because of the probability of scar tissue in this area from her first surgery they will have to be very careful while getting access to her heart.

We are all over the place emotionally. Of course we are disappointed to be back so soon and heartbroken that her arteries have not grown as much as we were hoping. We are grateful for all of the care that Ramona is getting. And she’s quite the social butterfly at the hospital, flirting with the nurses and showing off her girth. So that’s fun.

I am also grateful that this has not been quite as shocking and stressful as it was the first time around. We knew she was still sick. We knew she would need another surgery eventually. We know the place and many of the faces and are much more familiar with the tubes and beeps.

But it is hard and sad to think she has such a long road ahead of her still and I’m terrified of losing her. It’s hard not to think about morbid things like what songs we would sing at her funeral and will anybody want to be friends with the weird lady whose baby died? It’s also hard not to go the other way with it. I was thinking today that Ramona might like to be a nurse when she grows up. It’s just so hard not knowing.

Please pray that Ramona will hang tough and get through this. Please pray that the surgeons will be extra super careful when they open her chest. Please pray that our little family will be able to hold onto the joy we so often feel when together even when we’re separated like this. Here’s a pic of the dynamic duo getting a bath from Auntie Julie last week.

Thank you for your thoughts and prayers, Jane.

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