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.