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,

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.

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.