Wednesday, June 03, 2009

Jumping in with all four feet

Today we had the GI take the boys GJ feeding tubes out and replace it with the basic, low profile McKey Button G tube. It was actually quite painful and scary for them, especially for Cameron, and also complicated by their having woken up with their first official colds complete with sniffles, sneezes, runny noses and coughs. We've been busy with our social calendar and meeting lots of new people this week, so it seems that we've hit our quota on good luck with missing colds. As for the feeding tubes, the boys had the GJ intestinal feeding tubes for four months and they should have been replaced around 3mos, so it was really disgusting to see. We've been lucky so far but it's now the end of dodging bullets for now.

Anyway, the crew is home now and in bed by 6pm so that tells you how exhausted they are from their ordeal. I just wish they would stop waking up from the runny noses and nightmares. Someone's always screaming and waking up every 10 minutes it seems.

The reason we went to the G tube is because we've been feeding them by the G port on their GJ feeding tubes for the last 3 weeks with equal success as compared to feeding them on the J part of the tube. And they are both waxing and waning on they spontaneous vomit of bile from the intestine. Our hope is that, by removing the J portion of the tube which goes through the pylorus sphincter creating a necessary obstruction, the sphincter will close more and less bile with come through as well as removal of the tube decreasing the gag reflex. The doctors can't figure out why they sometimes randomly just throw up bile even while we are feeding them formula in the stomach, as if the bile is somehow bypassing the stomach on its way up.

IF this works then in the next two weeks I will start doing very small bolus feeds and keep the boys off of their pumps more during the day, but continue with the over night continuous pump feedings. The idea is to continue to give them "meals" all at once instead of over a slow drip period of time, thus stretching out the stomach and encouraging them to tolerate more volume. This way maybe we can get them to eat more by mouth and one day have the ultimate graduation party to celebrate being completely off the feeding pump.

I, being the honest and direct negative Nelly, have my doubts that this idea of switching to the G tube will work to alleviate at least the spontaneous vomiting, and still certainly feel their refulx is bad and the meds they are on are not working but the GI still refuses to increase the dosage of the Prevacid. I am afraid we will find we have to go straight back the GJ tubes, which is a nightmare to have replaced, and I don't feel convinced they can handle much volume in G tube bolus feeds but I guess there's only one way to really know if we're ready.

For comparison of the convenience of the two kinds of tubes here's a pic of the boys just after they had the GJ intestinal tubes put in. You'll notice the big plastic disk at the stoma site from the belly with a long tube ending in three large prongs or ports. This is a tricky thing to keep a baby, and his brother, from giving a good sturdy yank on so one must always be on their toes around these guys.

Here's a pic of Evan's new McKey Button G Tube. Cameron was not feeling up for the photo shoot. The red ring around the tube on his skin is the surgical antiseptic they used so don't worry that its bloody, it isn't.

In other news, we have officially retired our Graco SnugRide infant carriers. We will miss them soooo much! As heavy as it was to lug the boys in them, it was great because we didn't have to wake them and they had a great canopy to hide from the world under, as well as a totally awesome place to hang our favorite "Please Wahs Your Hands Before Washing Mine" freaky old lady who likes to touch babies without asking protection barrier sign. We went with the Recarro convertible seats and boy is it a pain to get them in and out of, not because the seats are bad - they're awesome seats. It's just that I much prefer tossing the baby bucket in the base or onto the stroller and be done with it. Now we have to make sure the boys are properly dressed (no more blankets and hats only), and lug them out to the car, lift them up into a seat and contort them into the straps from an angle out side the car door. It's a pain. But they will have these seats until they are either 70lbs and/or 8 years old so hopefully soon they'll figure out how to climb into them and buckle up on their own really soon.

Here's the first pic of the boys in their Graco SnugRide seats. Evan weighs 3 lbs 4oz in this pic, and Cameron was a whopping 6lbs 7oz. It is not hard for me to believe they were even smaller than this, I still have dreams about it like it is all still happening.

But it helps me to look at the pictures and see that they have come so far. Here's the boys as of about two weeks ago, Evan weighing in at 18.5 lbs and 27 inches, and Cameron at 22 lbs and 29 inches (the maximum weight and length limits for these chairs).

And here we are trying out our new big boy seats in the living room!

And a couple of random shots from this week. (My mother is standing just out of the shot so please don't think I'd let Cam stand like that with the crib side down unattended.)

Does anyone else get the feeling I'll be rearranging the furniture in this room one day???


Martha Compton said...

I hope the switch to the McKey works out better than you hope. I've had several students with them, and they are so easy to use!
Love the pictures of the boys hanging out in their cribs! I imagine one day they'll be climbing back and forth. We also have the Recaro seats and love them! I promise it gets easier to get them in and out once you get some practice.

Trish said...

Look at that boy standing up!

The mickey is easy enough to care for. I just put aquaphor under Robbie's twice a day (though lately only once has been fine) and he has no problems with it.

I hope the doctor's right about it working out, though I must say that hasn't been our experience.
Robbie's now on Nexium and doing somewhat better, but still puking like a volcano. Just has less pain.