I should not leave cliffhangers

Bonnie is at home; the contractions stopped. Even now we are so tired.

There is a long way to go.

Where she still is.

The doctors don't seem concerned -- she is not dilated -- but they are waiting for tests to come back to see what is going on. She may stay the night.

And fun things are always happening . . .

. . . like Bonnie just went to the hospital with contractions.

Time moves on, as it always does

Not terribly much new, though there is some good news. The territory claimed by the left lung is recognized to be greater than previously realized. Flynn's LHR is around 3.5, which sounds like a whole lot, when you think that originally it was estimated to be about .65. Of course, surviving right-side CDH is supposedly not linked to the lung-head ratio . . . but hey, more lung is better than less lung, yes?

Yes, that lung has a nub down at the end, unless it's a bit of right lung peeking out, which would be even better, I suppose. One doesn't know, exactly: we still haven't heard about the lung volume measured on the MRI. But all that changes day by day.

He is marinating in rolls of back fat, a pleasant image. Flynn's a chunk. No one has told Bonnie she has diabetes, so that is good too.

In Another Country

What makes it difficult to get a handle on CDH is that the science is so vague. My problems  begin with the simple question: “How common is it?” There’s  no clear answer. I’ve seen some websites say 1:2200 babies, some say 1:2500, others 1:3000, or 1:5000. Mind you, these are all medical sites or CDH organization sites. Then you move on to, “What are the odds of survival?” Here there are no clear answers at all, and you finally are left with a muddled 50-50, with the caveat that chances are far better under certain circumstances, such as no other defects in the organs (all though this is common) no trisomy disorders (also common) and so on. Left also vague in some sources is whether terminated pregnancies count among the unsuccessful cases. Is a left sided CDH better than right? Yes. (Maybe.) What are the odds on a right? Your guess is as good as mine; there are so few of them. (How many is few? Pick a smallish percentage written on a card out of a fishbowl. There’s your answer!)

Then there are the small numbers of babies who suffer congenital diaphragmatic hernia. I’d guess, by the ambiguous rates above, that somewhere between 1500 and 2000 babies a year are born with it. Yet the only studies I have seen happen at individual hospitals, who talk about periods of time of twenty years or so when they had forty or fifty cases, “and this is what happened.“ It doesn’t seem much to build a study on.

As if that weren’t enough, much of the research seems to happen in a bubble. Some focus on drugs to grow the lungs, some on a tracheal ligature, some on tracheal occlusion with balloons (are these two things the same? I don’t know!) Our route, tracheal occlusion with gel, doesn’t even come up on the radar except for one or two people who call it controversial; I suppose this is due to the fact that a premature birth would potentially leave a blockage in the trachea. Some hospital studies imply that doing nothing at all is best . . . except when you have babies  like Flynn that have no realistic chance of survival.

There seems to be no single voice speaking on the subject. It is as if every source operates out of an alternate universe where all these different things are truly so.

And what’s a realistic chance? Here’s where it gets confusing, as if it weren’t already. Some babies with small hernias and few problems succumb to the disorder; others with large hernias and huge issues survive. How long’s a NICU stay? Six days . . . six weeks . . . six months . . . take your pick. Again, little correlation between that and anything else.

What is the quality of life afterwards? The evidence is mixed. You read parent blog after parent blog and see happy, healthy children.  Then you read story after heartbreaking story. The studies ring out with grim warnings of mental disability, cerebral palsy, developmental delay, feeding tubes, breathing issues, a childhood on oxygen. Sometimes these things seem to happen. Often they don’t. Every baby is different.

Every baby is different. There is no rhyme or reason. There is no this is how it will be. Just one answer: given a thousand babies, you will have a thousand outcomes, and no WHY for any of them.

Flynn is strong, a hard kicker, a big baby, who moves around a lot. He has a lot of hair and he looks like his sister and he looks like me. He loves music, and seems curious and playful with the outside. He is a different baby, and his outcome will be different. It’s not for us to know now.

Dreamer in the Dark

The lungs peaked out at last week’s ultrasound in St Louis at a LHR of about 2.8; this week they are dropping back towards 2. This is to be expected: the tracheal occlusion has now altogether dissolved, and the fluid that had built up in his lungs holding his liver back is pressed back out. Nevertheless, the growth was real, and even in their more compressed state they are potential. Before there was next to nothing, a sad shred of a right lung unseen by anyone, and a dwarfed left lung, neither enough alone nor together to do anyone much good.

Now there is something to build on. The right lung, even, remains visible on the sonogram.

Bonnie’s amniotic fluid, which had filled to the brink at about 25, the upper range of normal, has dropped down to 21, a great relief to me (and to her!) That false signal that “Hey, I’m done, let me out!” could have tripped her into labor far too early. Now there’s one less thing to make that happen. Every week counts, but I dread the trips to St Louis: one week soon they will not let her come back.

Sparrow is doing well with all this, better than we feared. She is uneasy at the sight of her grandmother, because that means that Mama is going away—how long, an hour? A day? A week? Who knows!—but she understands a little of what is going on. Baby brother has a boo-boo, and the doctors are fixing it. How she will react when the who process becomes more intrusive in her life, I don’t know.

She looks so much like me, but Flynn’s ultrasounds make him look even more like me still. I try to imagine him as a baby, a child, a man.  I can’t quite do it, I can’t quite dream. So much could happen, could go right, could go wrong, could fail. We read stories and some are successful, some have lingering problems, and some are darker and sadder.

It’s like a distant nightmare, and I don’t believe in it yet. It’s as if someone else were telling a story about someone else’s life. But it is me, it is us, it is him. It is a little boy curled up inside his mama, dreaming, kicking, smiling in the dark. I wonder if I will ever look him in the eye and call him my son.

It will be what it is. I don’t question or pray. Right now he is happy in his warm place. Right now he is all right.