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.