Update

In most things that he does Flynn seems pretty much on target, neither unusually advanced nor worryingly slow. He seems pretty much like a normal eleven week-old. His only shortcoming is feeding. He hates to eat by mouth, and this is a great trial to us, since he depends entirely on his g-tube for food. I have visions of someone sitting in a high-school cafeteria holding up a vinyl feeding sack with a line running to his stomach.

This won't happen, I suppose. It will take time. And there are worse problems that we could have.

He is mostly sleeping through the night, he smiles, swats at his toys, watches everything. He wants to be held much of the time, too, which can get in the way of a lot of things. But I did say that we could have had far worse problems.

We are going back to St Louis for a day and a half so they can put in his mic-key. Temporary, one hopes. He's also going to get another echo so they can check out his murmur and his hypotension and I daresay they are very interested in how he is doing generally.

He has gained quite a bit of weight, just about half a kilogram in the three and a half weeks we've been home. Since the 17th of January, he's regularly gained about 30 grams a day. He's much smaller than Sparrow was at his age, still about 5% or less for weight, but he seems to be making up for it.

We shall see.

I'll try to post now and again as interesting things occur but I think I can sum up: we were completely lucky, and our results were not typical. Thanks to the Fetal Care Institute we had such a wonderful outcome, and we hope and expect that the techniques that they are pioneering will lead to a sea-change in how babies like Flynn are diagnosed, treated, and survive.

Recent Photos

Our story on Fox 2 St Louis

I am wary of looking silly on TV, but this was wonderfully done.

http://www.fox2now.com/ktvi-fox-files-miricale-baby-20110203,0,5215178.story

And--

We are all home.

Yes!

Tuesday.

Tuesday night, we are sitting here at Ronald McDonald House in a land of snow. Between our beds is a RMDH pack and play, and in it is a very full and sleepy Flynn.

I'm not sure what miracle put him in our hands. There was some debate on whether they wanted to let him go. But in the end they looked at the total growth curve, not the weight changes just after surgery, and decided it would be ok.

We walked out of the NICU, and we had our son, and our daughter, and all of Flynn's little things, and it is as if it was always meant to be. I do not know what to think, except that tomorrow is another day, and every day after that will be another day.

The journey is not over. It is never over. It has just begun. But it could have been so much shorter, and so much worse. We are truly fortunate. We are truly lucky. We are truly blessed.

I can reach out and touch him. And we are going home.

Waiting no longer. He is with us.

No.

Not tuesday. He lost weight today.

Car seat test passed

That's when they strap him into his seat and let him sit the and see if he desaturates his oxygen. For the record he does not like his car seat, but he passed the test, which was the important thing. I am hoping that a change of scenery plus the hum of the car will encourage him to be content or simply sleep.

this morning I mixed his food and fed him and then walked him around the halls for over an hour. Bonnie is over there now learning how to care for the g-tube and the dressing. Later we will go over, sparrow and I, and see what else there is to do. Cor now, I have the car packed and ready to go against the threat of snow.

Very, very, very close we are . . .

Tuesday?

So Dr Ali says, as in "Probably not Monday." but still I hold my breath. So close, it could still be so far.

Hallelujah!

Next Tuesday, at the latest, Flynn is coming home! Details to come.

. . . and done

The surgery went well. Evidently last night he pulled his feeding tube out just like he pulled out his vent a day early as well, and he was an angry little boy this morning, hungry. Surgery got started late so Bonnie walked him around and giggled him and made him happy, Something that would have enraged an infant Sparrow. But everything seems OK. He will not get to eat for another day or so, so he will be one hungry little boy, but he will have an IV.

Procedure this morning

I don't want to call it another operation, but I suppose it is.

Sometime around now.

I miss everyone terribly. I am so tired. I know Bonnie is as well.

On a walk

Flynn got to go or a three minute walk around the NICU yesterday, with Bonnie and a nurse. He is down to one dose of methadone every 24 hours now. Otherwise he is doing well. He was awake all morning and had his baby aerobics and actually pushed himself up a bit when laying on his tummy! The therapist was impressed. More of a two-month old kind of thing, and yesterday he was six weeks old.

Tomorrow is his g-tube placement and fundoscopy. I that goes well and he recovers rapidly, we are so, so close to getting him out of there.