G-Tube and Fundoscopy

Yesterday evening they did the barium test on his acid reflux, and a thin wisp of barium did indeed trail up out of his stomach, clearly visible on the fluoroscope. "Even Dad saw it," the pediatric nurse-practitioner said. So they are going ahead with the fundoscopy and the G-tube insertion. After a week, likely, of recovery, then maybe he can come home.

Maybe, maybe, maybe! I fed him today, and he was in such discomfort, he did not want to it. It hurts to see him that way. It hurts to not have him at home. It hurts not to be there.

A Little Video

From just over two weeks ago . . .



He's far more lively now.

Another trip

I have forgotten how many times I have gone to St Louis now. This might be the sixth or the seventh, who knows. I am getting to know Greyhound and Amtrak quite well: Amtrak takes longer, but I prefer it. I cannot imagine taking Sparrow on a Greyhound because at least on the train she can run around a little bit.

Reading CDH blogs again . . . some are so heartwrenching that I sit at my desk at work and cry. What have I to be sorry of? Why should I be impatient? So much can go wrong, so much has gone right for Flynn that I feel that I do not have any right to complain, and I do not. So many things have been done for us by so many people, wonderful people at the Fetal Care Institute, Haven House, the Forest Park Hampton Inn, Ronald McDonald House, Cardinal Glennon Children's Medical Center, SSM St Mary's, the Peet Center at St Luke's who gave us the diagnosis,  Bonnie's OBGYN, college friends, strangers and friends both online and in person, people at information booths at Union Station . . . the list goes on and I could never come up with them all to thank them. I am not much of a man, I suppose: I have been near and at and beyond tears many times, often at the drop of a hat. Little can push my buttons more than a sudden unexpected kindness.

It has been a tremendous journey. I have said that there has been nothing wrong with it, that I would not have traded it for anything, if it was the only way I had to wait for Flynn. I say it again.

But it is another trip to St Louis, and another trip back, and then another week without my dear ones who remain behind. I just want them to come home.

Tongue-tied no more

Time stretches on.

Flynn’s tongue tie has been cut, and he didn’t seem to mind too much. He is still reluctant to eat, and who could blame him? with the acid reflux he has. But he has gained a little weight: still not yet enough, so he still is in the NICU and still in St Louis and no immediate “trip to the zoo” in the offing. But we have to be getting closer, don’t we? I now have planned comings and goings with Sparrow and myself to St Louis and back past the mid-mark of January in the hopes that by then, surely, surely, this will be over with.

He is a snuggly baby, All he wants to do is be held, and he won’t let Bonnie go. All we want to do is hold him.

All we want is for him to come home.

First and goal is the hardest down

So close, yet we cannot pass.

The speech therapist has recommended that his tongue tie be clipped, so that should happen today. His day is described as sleepy, so he probably won't be looking for that much excitement.

They are, otherwise, going to wait a week and see how the feeding is going. Start of next week, if things are still the same, they will do an x-ray study to determine how much is being refluxed. So no surgery this week. And Christmas is pushed off another week.

Poor Sparrow! Faced with gifts under the tree she brings one over to me and asked to open it, and cries when she can't. I explain that Santa is coming again, but we have to wait until Mama and Flynn are home.

I don't know when that will be.

Refluxy

Despite gaining quite a bit of weight--he's up to 8 lbs 6 oz -- Flynn isn't a fan of the eating because of his acid reflux. It looks more likely that Dr Yang will do a procedure that will bring part of his stomach around the lower part of his esophagus, creating a temporary valve, and place a g-tube. In some ways this would be better for him, decreasing his discomfort, increasing his feeding, and getting him home even sooner.

Other than all the reflux, he evidently had a good Christmas. I held him for over an hour, and he slept the entire time.

Waiting for Santa

Flynn has been a very good boy this year, and though he would have been happy to go home for Christmas one can't have everything. As it is in about a week Dr Yang will decide if it is ok for him to go home or if it would be better to have a g-tube put in and send him home after two or three days recovery.

He is a sturdy little guy and has taken quite a licking and keeps on ticking. I am sure St Nick will stop by the NICU tonight!

No oxygen anymore. All he has left is sensors and a feeding tube.

Eats, sleeps, pees

He peed on me anyway, today. "Oh, Flynn," I said helplessly.

He's eating more and more, and that's his only hurdle. He's overcoming it with grace, and weighs over eight pounds now. We are so close . . .

Sparrow got to see him through the NICU door today, and was excited up until the point she saw him, then became doubtful. But later she said, "I want to play with him." so all is well, I guess. I suppose she was suddenly struck with the thought, "oh, he DOES exist, after all!"

See How Far He Has Come

Broviac IV out

Now all Flynn has to worry about are some sensors, the nasal cannula, and the feeding tube. The air in the cannula has been turned down to 1, so there's really only the notch to zero to go there.

There is still some talk of putting a g-tube in him, but I hope it won't be necessary. I would rather spare him the discomfort of another procedure, and the recovery from it, and just deal with the ng-tube as long as he needed it.

He has come so far, in just four weeks and two days. In my wildest hopes I would never have thought we would be standing so close to success as we are.

Our experience has not been characteristic. I do not know what conclusions other parents may draw from what has happened to us. Fortune has indeed smiled on Flynn: he is doing the impossible. None of this could have happened without the Fetal Care Institute.

Getting nearer

Flynn continues to slowly gain weight, use less methadone, and otherwise grow into himself. His on prevacid and likely will be on it or some time. He does his baby aerobics to build his mobility and flexibility. We're told that the day of his going home is approaching. The IV in his chest is coming out in the next couple of days. He will probably come home with a feeding tube, but coming home is incredibly important. As well as this has gone, it is so sad to be apart from my wife and daughter in St Louis, and from my son.

But I am thankful. Things could have been so much worse.

He is a month old today. A few months ago I didn't think that could happen.



(I would like to thank Paula and Tracy for the wonderful help they have given Bonnie this week. Thank you thank you thank you!)

Waiting for the weekend

Bonnie was going to go yesterday to St Louis, but came down sick: sick people aren't the best thing for the NICU so she is recovering at home right now. Weekend comes, we will go.

Flynn is doing fine. Took 8 ccs of milk at his nipple feeding. He is up to 21 on the continuous feed and I believe they plan to strive for more. He's been doing well with methadone withdrawal, and soon should be on no drugs at all. He has been comfortable, they say, if somewhat fussy. He seems to do best when people have time to comfort him, but that is not easy: there are so many sicker babies in the NICU.

I'm glad I can say that.

I watched videos of him last night and I wanted to reach out and touch him, but he was not there, just very far away. Such attentive eyes, watching his mobile as it goes around and around. Sparrow always seemed suspicious, wary. Flynn seems to ponder. "Don't know what I am looking at," the eyes say. "But I want to see,."

Sparrow loved the windows in the living room, and would lie there, a few weeks old, watching the curtains ballooning in and out with the breeze. Even today, after coming back from St Louis and declaring, several scores of times, "This is my home," she would look at those windows when she said it, those curtains. It's still a part of her mind, two and a half years later, even though she doesn't remember. Something about them creates a response.

What is Flynn laying away in his head, fodder for dreams and unremembered memory? What means home to him?

I am happy it looks like we will have a chance to find out.

Not much to report

Milk to 21 ml per hour. They try to nipple him, but he tends to gag a little. Fairly good days with a little fussiness. Just a baby.

Flynn asleep

Breast milk at 13 ml an hour -- 0.88 tbs, or 1.31 cups a day; tpn down 1 ml. I like him asleep. No one gives him Verset that way! They are aiming or 20 ml an hour or more, but want to switch him to feeding like a baby, not a regular flow.

Cannula pressure down to 1, I think, of room air.

Bonnie is coming home Sunday, and has terribly mixed feelings. But then she will go back Tuesday morning and come back Wednesday night, and then we'll go back Friday again for the weekend.

Moving Day

Flynn is losing his double room. Since he doesn't need a mass of ECMO equipment, since his pressure in the cannula has been lowered to 3, and since  he's now in a real crib instead of an isolette, he's getting a little single room across the way. Apparently they need his room for a much sicker newborn who's supposed to arrive very, very soon.

I hope that baby does as well as Flynn is doing.

Another day, another inch forwards

He's up to 9 ml of milk an hour, and they are putting him on methadone to wean him of the fentanyl. His doses of Verset still come when he his particularly irascible, but are less frequent. Still breathing rapidly, but that is slowing a little. That is what will interfere with his learning to feed: he has to have a normal rate. It will come, it will come.

Odds and Flynn ends

The nurses think Flynn is cute, and would all like to be taking care of him

He does have a bit of a tongue tie, but Dr Yang says one thing at a time.


He had another echocardiogram today, and the valve between the chambers that newborns have that closes, hasn't quite closed, and they're watching that, but aren't yet unduly concerned.

His milk is up to 7 mls an hour, and he's digesting it all and gaining weight.

He might be home in 2 to 4 weeks.

I miss him, and Bonnie.

No Flynn for me today

It is very strange not to see him. His gasses were good and he is being fed 5 ml of breast milk a day. Bonnie thinks that's giving him more reflex, and she thinks he might have a tongue tie, which would have to be cut or he'd have trouble feeding.

Flynn flies along

They were going to take out his vent Monday . . . but five this morning he pulled it out himself. So at six thirty this morning there I was holding Flynn again; he has a nasal cannula. He has an angry, raspy little hoarse cry not terribly loud, but when I hold him he studies me then slowly falls asleep.

He has had a good day: his blood gasses are at 44 as of five this afternoon, which is good--far better than could be expected. The oxygen is set to 40.

We keep hearing that things are better than could be expected, and it keeps being true.

I am back home in Kansas City. I want to be here, and don't want to be here. Sparrow is ecstatic. I wish I was holding Flynn. I wish I was with Bonnie.

Better and better

It is hard to keep track of what happens. Now it happens so quickly, and so far it is always better. For instance, he is now taking 2 ml of breast milk an hour.

First, his chest tube came out today. Dr Yang said that the body would produce serum anyway as long as a foreign body was there to irritate it, and it would provide a path for infection, so out it came.

Second, his vent might come out as early as Monday, which is huge.

Third, I got to hold him like a real baby, in my arm for forty-five minutes. When they moved him over to me he turned red and scrunched his face and wailed silently as if expecting some fresh torment, but when he realized it wouldn't be so, he opened his eyes and we calmly studied each other for a long time until he fell asleep.

Many times I thought this day would never happen . . . . And here it is.

And then . . . Tomorrow my daughter and I go home, leaving Bonnie and Flynn behind.

But we are waiting. Waiting for Flynn.

No UTI

And his fever broke. They are still awaiting the results from the cultures, but though the Gram stains indicate presence of all kinds of little critters as you would expect, an infection isn't apparently going on.

His foley is out so he's peeing on his own. They tried feeding him breast milk through his tube yesterday, but his body wasn't sure what to do with it, so they will try again another day. Vent down to 35, oxygen back down to 24, and he seems very happy with it.

The night nurse and another were changing his bedding; the second held the vent and the first replaced the bedding. I, sadly, had to pick him up and hold him for them. A great burden for me, seeing as he gained weight again and is up to 7 lbs 13 oz.

First time I ever got to hold him . . . Time was I didn't think it would ever happen.

My visit this morning

Saw him sleeping. For the first time he looked comfortable. He even did one of those super cute sleeping baby smiles. And he was sucking on his tubes again. I think it was one of the cutest sounds ever. His heart rate is down to 165ish and they are thinking that the infection is from a uti.

Doing fine

His lungs are steadily taking up more space, slowly unfurling. His chest x-rays this morning show that the darker are of fluid at the bottom of the right lung have disappeared and it appears the lungs have inflated to take up substantially more area.

He had a good night. They turned down the oxygen yesterday evening to 21 percent, but raised it back during the night when he became uncomfortable. The fentanyl followed the same pattern, hand in glove. But the expect to wean him down again soon.

First night after surgery

It went pretty well. He is running a low fever (99 degrees or so) but it may be from any one of a number of holes, major and minor, cut into him yesterday as well as new lines threaded in in various places, but to be sure they have him on a second antibiotic. He doesn't look bad at all, just a little puffy around the eyes. His oxygen is 25 percent, scarcely above room, and the right lung is bigger, I'm told, and more audible than ever.

A very good day

We all went over; I insisted. I couldn't wait alone (even with Sparrow) again.

Sparrow was very good: and so was Flynn. His vital signs were stable throughout the surgery and did not waver; only his blood pressure dropped a little as Dr Yang pulled his liver out, since so much of the blood passes through it. There was a little diaphragm in the left, like the rubber seal of an old style jar. The patch was sewn in there, with a bit of a dome so the organs would fit below. X-rays showed the presence of almost half a right lung.

He is lying there peacefully tonight. We shall see what tomorrow brings.

Surgery this morning

Bonnie is getting ready to go over. He managed to pull out his tube during the night "but otherwise was a perfect gentleman through the night".

One week old

Late last week the theory was that Flynn's surgery would be Monday, today. Then Friday, I think, they decided that he needed another echocardiogram: the pressure between heart and lung was still equal and needed to correct itself. In the womb it is equal but changes afterwards. CDH babies have difficulty making the transition, and this causes hypertension, which is one of the main killers of CDH babies . . . Too much blood being forced into too small of a lung.

So they did the echo, and it turns out that he had corrected his pressure. Going there this afternoon I discover that they had just decided to do the surgery within an hour. My wife hurried over, and we talked about the surgery with Dr. Yang, and signed the consent. However, shortly after they decided that it would be best to have the operation tomorrow to make sure they had maximum staff available in the pediatric surgery department.

Roller coaster! I felt drained afterwards, but still upbeat. Dr. Yang feels he won't need ECMO, that he should come through with flying colors. He will be worse before he is better . . . But he has a chance to be better.

Tomorrow will tell how it begins, because the waiting begins again.

Thanksgiving

It is snowing here at the "castle," as Sparrow calls it, and she says, "Santa is coming!"

White flakes tumbling down. Millions of them, like human lives whirling by.

Flynn is still flying, whirling, stirring his arms, opening his eyes and studying the vent tube over his head. Dark blue eyes, dark brown hair. They say it is best for him to get lots of REM sleep to help him grow, so they have turned him on one size to relieve pressure on the lung and they have sort of swaddled him a bit to help him keep still and calm. The echocardiogram still indicates a pressure differential between lungs and heart that they don't want, so the surgery has been postponed to Tuesday at the earliest.

Each day is a different day. Bonnie got to change a diaper yesterday, and i got to change one today. I lifted his little butt up to get the diaper under, and it was close to a normal thing, feeling the weight of a baby and smelling the smell of a baby and feeling the warmth of a baby. Almost normal. After, the decided he was too active and upped his medication to help him be calmer.

So I am thankful for everything, strange as it might seem. I am thankful for everything.

Three days old

Is it Wednesday already? So much has happened.

They have progressively dropped his oxygen until it is down to 30 percent. He was taken off nitric oxide yesterday. His bilirubin is slightly elevated, but so was Sparrow's. They have been slowly pulling back on the vent but I don't know currently what the breaths per minute is.

Dr Yang says they are surprised he is doing do well with the chest x-rays he has, "But we'll take it!" I keep wondering if there is more right lung concealed by the liver that cannot be seen.

Echocardiogram and more chest x-rays today, results are not yet in: when Bonnie gets back I may know more. The last I spoke with the NICU the expectation was that surgery would be Monday next.

We are all tired, my poor 2 1/2 year old daughter most of all..

So far, so good. Flynn is flying.

He has a left lung, which fills everything that you would expect a left lung to fill. The right lung is as small as small can be and still be called a lung. However, his blood oxygenation is excellent: when I talked to Dr Yang after the surgery, he said it was at 90 percent oxygenation; when I saw him in the NICU it was up to 98 percent, and they had dropped the oxygenation a little to 90 percent from 100 percent oxygen. He is not on ECMO, he is only vented and sedated. Everything is going as well or better than could be expected. The team was fantastic. We could not have had better people or a better situation to be in.

Now we see how Flynn likes being outside.

Bonnie is doing well, and came through the surgery with no hitches. Flynn, Dr Vlastos says, is flying.

Born

Flynn Charles Michael Leigh-Baker, 11/22/2010, 7 lbs 8 oz.

Waiting

I am sitting in a room. In the room is a sink, a cabinet, a tv (Animal Rescue) a locked computer terminal, a couch, and a wall of medico-mysterium apparatus and ports.

One thing that is not here is my wife, nor my son. They are in an operating room with I don't know how many doctors and nurses. I am waiting for Flynn, and I am waiting for Bonnie.

He is measuring wonderfully, the lungs have done as well as one could hope for under the circumstances, and as of today is officially full term, 37 weeks. He is a strong baby, very active, and he is going to have a big day. My daughter is with nana and papa. I am here. I will be here a few hours . . . Two, three, four, who knows.

There is no better care in the world that Flynn could have gotten. No other team could have done for him what the Fetal Care Institute and Cardinal Glennon Children's Hospital and Saint Mary's Hospital has done. I am sitting here in full knowledge of that. And I am sitting here with so many people and so alone.

I am waiting for Flynn.

Alone Again

Bonnie is in St Louis, and that is where I want to be, with her and my little girl and my swimming-in-the-dark son. But here is where I have to be a little bit longer. Everything is coming rushing in at us faster and faster. I can’t think about anything but that. Fourteen days away. I feel like everything is coming to an end: pregnancy, life, son, job. All I can do is stare out the window, and in my mind I am already on a Greyhound heading east.

Wednesday afternoon, no sooner, unless there’s a sudden change in circumstances. Wednesday afternoon.

He is huge

We are at the tail end of week thirty-four, and Flynn’s head is measuring at forty weeks, his body at thirty-eight weeks developed. If we actually keep him squozen up in there for the next seventeen days, by my math that should make his head forty-two weeks, his body forty and beyond. He will be nearly as big as Sparrow when she was born, and she was two weeks late.

His physical exam, so far as they can examine someone who’s hidden in a lightless sack of warm water,  comes out 8/8, whatever that means. He is perfect in every way with this one exception: he has  a whole lot of liver in his chest. He has a lot of hair, and he looks just like Sparrow: button nose, stubborn face. He was slumbering at this week’s usual ultrasounds, so they used a buzzer on him, which startled him to no end and got him to thrusting around for whatever had scared him.

They have their blog up and running  over at the Fetal Care Institute, and we’re the fourth entry on it -- Preparing To Help A Baby With CDH. It is strange to read about one’s son as an anonymous baby boy about to undergo an almost science-fictional procedure. Stranger still to read that that thirty, thirty medical professionals will be in the room and that they have done two days of practicing at two different hospitals.

Real DiscoveryHealth channel stuff. I recall some show where they were delivering octuplets or something equally unlikely, and if memory serves a team of thirty or forty were on hand, and I thought to myself, How do they all fit in there? What do they all do? I find it even more alarming now.

I get chills: in 413 hours as I write this I will be sitting in a waiting room feeling sick at my stomach, as sick as I ever have. When the nurse called me after the really minor procedure on Bonnie (and a risky one for Flynn) I cried, because I had been terrified of losing them both. Imagine what I will feel now.

I cannot imagine. Just breathe, breathe, breathe.  Friday Bonnie goes to St Louis to stay for thirty-five days.

So long. And it will not be over, even then.

But my son is a big boy. He will need every inch and ounce.

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.

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.

One day at a time

Today Dr Yang called Bonnie, and they talked for a few minutes. Flynn's case is indeed serious, but they definitely want to talk to us and take a look at him through ultrasound and echocardiogram. We will be there Thursday.

It turns out that the two babies who were born after this technique was used were both born with normal sized lungs. Hearing that gave me some hope that there might be a way through all this. It's hard to imagine right now, and I try to accept whatever might happen and not think about possibilities. We are where we are, and nowhere else.

But maybe.

Amnio

Flynn's initial amniotic results came back today. He is a boy (heh!) and he does not have Down's or the trisomies. We will be going to St Louis on Thursday.

Happy Accidents

Life is what happens to you when you are busy making other plans, isn't what they say? A long series of happy accidents.

So Flynn was conceived. I wanted another child, and B. wasn't sure she wanted one just now. We have a beautiful daughter, S., who's just less than two and a half years old. Flynn came by in the usual way, though less expected than Sparrow had been: but no less wanted.

So he grew and he grew and we went to the doctor and so a brilliant little light flashing in the dark, the flicker of his tiny heart in the ultrasound. All seemed quite well.

Then we had the 20-week ultrasound. The technician thought the heart was a little far to the left, and the doctor agreed. There were three possibilities. His heart could just be set a little far left in the chest, but that was a little unlikely. Second, he could have a CCAM, a congenital cystic adenomatoid malformation, a cystic piece of abnormal lung tissue. This can be repaired in many cases by removal after birth, sometime during the first year of life.

The third possibility was CDH, congenital diaphragmatic hernia. This was the worst diagnosis. It is caused by part (or even all) of the diaphragm not closing correctly, allowing organs that usually lie below it to enter into the upper chest cavity. The most common is Bochdalek hernia, where stomach, intestines, liver, or spleen can escape into the left side of the chest cavity. Rarer is the Morgagni hernia, where the liver or sometimes intestines move into the right side of the chest. Dr P felt based on the density of the tissue pushing the heart to the left that if were anything abnormal it was probably a CCAM. Naturally we were unsettled by this. Who wants their child to have surgery ever, much less in the first year of life.

We went back for a second round of scans in three weeks. Dr. P studied and studied what he was looking at for the longest time, but decided in the end that we needed an MRI to accurately diagnose what was going on. Flynn grew two weeks more, a strong and active kicker.

B. had an uncomfortable time of it in the MRI machine, but soldiered through. Then, just as I was telling her what a strong and good person she was, we got the phone call.

It was CDH.

So now we are learning what to do. CDH has a 50% survival rate nationally. We are fortunate in that there are very good hospitals in the region for children, such as Children's Mercy in Kansas City and Cardinal Glennon Children's Medical Center in St Louis. Glennon, in fact, has a cutting edge procedure where a slow-dissolving gel placed in the trachea. This prevents the fetus from swallowing: instead the fluid builds in the lungs and helps expand them. Obviously the lungs cannot develop properly when they have to compete for space with other organs, and poorly developed lungs can lead to death or extended NICU stays.

So we had an amnio, to see if Flynn has other genetic issues that reduce his chances, and we are going to go to Glennon and confer with them to see if they believe that this procedure could benefit him.

Life's a strange and tricky thing. It is all accident, isn't it? once you think about it. We hope, at the very least, that we can help someone else, through happy accident, if nothing else.