Tuesday, April 10, 2012

An overdue update

It has been a long time since I posted and do much has happened. Flynn is no longer on a feeding tube -- he's taken nothing by tube since I think October of last year. It feels like a lifetime ago. His g-tube fell out in January but it wasn't until just a couple of weeks ago that we had it surgically closed at Children's Mercy. We ha hoped it would close by itself given time but it was just not happening and bothered him terribly.

He is far friskier and weighs more although he is a little boy. He doesn't walk yet but cruises agilely. We hope that comes soon.

Sadly we hear that the Fetal Care Institute is no longer doing the gel occlusion although that's hearsay from the net right now. We feel do fortunate that it worked for him and still can't believe it did. I hope the Institute is working on something else,

Sunday, February 6, 2011


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.


Tuesday, January 11, 2011



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.

Monday, January 10, 2011