June 22, 2011

Today's GI appt ended up being more involved than we'd anticipated when we showed up at 8:00 AM. In the end, it's probably a good thing but it required some flexibility and phone calls to Greensboro asking for additional help with Jacob and Jensen. Our sweet friends and family who have so often helped us on a moment's notice will never comprehend our deep appreciation for them. Most of the time, they're altering their full schedules on the fly to accomodate our needs. It's a blessing. (Today, a co-worker came to the hospital to pick me up as we'd left my car at the office thinking I'd be back an hour later.)

Back to Janie...We've sort of felt like we're spinning our wheels with next steps on her eating. As discussed at length, the current feeding tube arrangement is sort of like a band-aid that's been in the pool too long and cannot be relied upon much longer, but there hasn't been much in the way of answers to the question of "where we go next?". Unexpectedly, but probably necessary, the next step was taken this morning. Janie's feeding tube has officially been pulled back into her stomach so that we can observe how she handles it. In the end, it's trial and error and we won't know until we try. So after 3 x-rays this morning, we now know it's correctly positioned in her stomach. We'll be anxiously keeping an eye on her over the coming hours to see how she reacts. Hopefully, her stomach will accept the food and we won't be back later in the week needing to drop another tube into her intestine.

You may recall that coming out of heart surgery, we thought the tube was in her stomach. We asked you to pray that her stomach would respond to the feeding regimen. Later, we found out that it was in her intestine. Well, we humbly ask you to fire those prayers back up again. If her stomach is willing to accept this nutrition directly, two things are more likely. First, she may finally better feel the sensation of feeling full and hungry which could help her eating. Second, it would allow for use of a G-tube (direct port to her stomach) going forward should she not immediately figure out how to sustain herself completely via her mouth. There is a varient of a G-tube that can go to the intestine but we're told it's not an ideal solution.

Jennifer had a noon appointment scheduled for her this morning with a nutritionist to make sure our recipe is right for feedings to the stomach and she should be in that appointment as I write.

Please pray for Jennifer. Therapy, dr. appointments, coordinating care for the kids during these sessions, coordinating information amongst several different doctors is nearly a full-time job. Meanwhile, she desperately wants to be actively involved with the summer-time activies of Jacob and Jensen. Energy and strength are at a premium these days.

By the way, JG's been putting on the weight the last couple weeks. As of this morning, she's north of 12 lbs for the first time in her little life.