A thing like autumn

So many days gone by! Yet all is well, so far.

The surgery was successful, as far as it goes. Dr Vlastos and Dr Yang implanted the gel in Flynn’s trachea, and the last time they looked at it, there it still was. That’s been two weeks ago, so I guess this must be the third week in. It is supposed to dissolve in about four weeks.

Bonnie is not here to remind me of the exact number, but I think they estimated his lungs at about 1.25, and a day after the surgery they had, no doubt due to pressure of contained fluids that normally generate in the lung, had expanded to closer to 1.6 or so. A week after the surgery the ultrasound indicated the lungs had expanded to closer to 2.4, which certainly indicates growth.

The interest, mind you, is in the left lung. The right lung has been unseen before this, just a rumor. But last week at St Luke’s the ultrasound revealed just a hint of the missing right lung, a suggestion that maybe the procedure was having an impact there as well. We don’t know what Monday’s MRI at St Luke’s may have shown: those results have been sent off to St Louis. We hope the results will be useful enough to the Fetal Care Institute, else Bonnie will have to stay overnight in St Louis.

If all goes well, after he is born his lungs will have a chance to grow and fill the space where the liver was, once it is moved back down to where it belongs. He will never be a mountain climber or a jazz saxophonist, but . . .

But today, right now, Bonnie is on the road to St Louis, taking most of my world with her. How Sparrow will feel this evening I don’t know: she misses Mama acutely.

So do I.

On The Waters

Tomorrow we go to St Louis. I don’t know where this is going to lead: who does?

The facts: Flynn has two very small lungs. The ratio has been quoted variously from .65 up, depending on which doctor and which method is used, but it is very poor at best and impossible at worst. Most of his liver has entered his chest, and some intestines as well. There may or may not be a hint of an amniotic band or a skin tag at the back of his head, which all things considered they aren’t worrying a lot about just now.

His prognosis as a baby without intervention is poor. He would almost certainly be put on ECMO, the heart-lung machine, to avoid what would probably be a quick death from suffocation or heart failure. Once on ECMO, his chances would again be poor, and even survival would not necessarily mean an easy life.

They have been very honest with us. The procedure is experimental, and due to the invasion of the womb risky in and of itself. Flynn will be the third child to undergo it ever. There is some controversy at this point about it, but to my mind it sounds the most reasonable and gentle way to approach it. The lungs will retain their self-generated fluids within instead of expelling them into the amniotic fluid and the building volume of fluid in them will allow them the ability to grow against the pressing mass of the liver. The other two children had lungs much closer to normal size at birth, so indications are that this can work.

But there are no promises, no assurances, no bargain to be made. Things are to be what they are to be.

I do not pray, I do not ask, I do not hope. Flynn is in the hands of forces far greater than himself, lying curled in the womb like a small sailor in a little boat bobbing in the deep water, unable to see above the crests of the waves to the shores that may lie beyond. If his boat lands, it will not be my steering that guides it, and so I have to trust that whatever pilot is on his boat’s deck is wiser than me.

So we go to St Louis, and Friday my wife and my second child will take the first step on a long road.