Ups and downs

I talked to several doctors yesterday. It's humbling to know that so many skilled and experienced doctors are considering Brigid's situation and weighing in on how best to treat her.

One doctor I spoke with was someone who'd talked to me after her MRI. He explained the surgery they'd need to perform to repair the double arch and said that "it's not a major surgery." Of course, when you're under four pounds, any surgery is major, but he meant that this is minimally invasive and one that they perform relatively frequently with minimal complications. I was feeling relieved by this when he went on to explain that because Brigid's trachea is so floppy, they may have to do a tracheal reconstructive surgery at the same time - a much more serious procedure.

This felt crushing. I asked him since the double arch surgery was the simpler of the two, could we not just do that one first and see if that helped her tracheomalacia before we did the other, more risky procedure. He didn't think that was a good option. Her attending physician had told me that a lot of different doctors were going to weigh in on the decision, considering the pros and cons and deciding on the best plan of action. I wasn't sure if they had already weighed in and this was their decision.

I was scared and cried on the drive home, praying that the doctors would reconsider.

Later in the afternoon, I got a phone call from her attending physician. She had talked to the doctor I spoke with, and also several other doctors that afternoon. I told her that I had some concerns about the surgery and asked if they could please consider just doing the double arch repair first to see if the malacia resolved. She said yes - that was what all of the other doctors had decided would be the best course of action (thank God!), and she put me on the phone with the cardiothoracic surgeon.

He was so kind and explained that despite her small size, he felt confident the procedure would not have any unexpected risks (of course, there are always risks), and that this is something that is often performed on infants. He said he would like to sit down with us and show us the MRI images, explaining exactly what they were going to do.

Then he said that in his opinion, this surgery would completely resolve Brigid's breathing issues. This was like music to my ears. He said that the malacia only exists in the exact spot that the vessels are in and he doesn't believe they are coincidental. I was so relieved.

We are meeting with him today to review the images and to discuss his findings and recommendations. As of today, Brigid is scheduled to have this surgery on Monday.