Day 6, 11:30 AM

So yesterday at noon, Janie Grace's IV was turned completely off to make her uncomfortably hungry and thirsty if necessary. We hoped to see some progress from the bottle. She took some sips that would have been equivalent to us leaning over the drinking fountain for a second or two, but didn't show much interest. Nonetheless, she remained pleasant and compliant for the most part. We continued to try every 2.5 hours but with little success.

As a result, the decision was made to insert a tube into her stomach yesterday (Saturday)evening. She immediately went onto a regiment of 2.3 ounces every 3 hours. We offer the bottle first and express her the remainder immediately thereafter so that she gets everything over the course of 30-60 minutes. One tricky component to this that will require some juggling is that her bottle feeds are thickened but her tube feeds cannot be. Therefore, unfortunately, Jennifer won't be able to just pour the leftover balance from the bottle into the bag. It will require running a dual path with preparation of her food. In many respects, we'll have a newborn again at home. However, with the feeding tube, we'll get her nighttime feeds prepared before bed and set alarms for 3-hour intervals without need to wake a sleeping baby as she tends to rest well at night.

Janie's feeding is quite challenging as she's a moving target (head is constantly moving) and her tongue lacks coordination. Please pray that improves.

The fact that JG is responding to these tube feeds so well thus far is an answer to prayer. Earlier in life she tended to gag and reflux quite a bit. While she's clearly uncomfortable by the time she's done being fed (her stomach probably feels like it's getting Thanksgiving dinner every 3 hours), the fact that she's holding down her food is an excellent sign. Please pray that her stomach learns to handle more than she's accustom to.

She is now completely off of her oxygen supplement via her nose. Therefore, all necessary precautions for her heart are off! We are suddenly quite mobile when she's not being fed. We can walk the halls and may spend some time on the roof top terrace this afternoon as it's a gorgeous Easter Sunday in NC.

The h-word has been mentioned for tomorrow (Monday). We're hopeful but will still plan on Tuesday. With it being a holiday weekend, some of the final in-hospital appts cannot happen until tomorrow. Tolerating her feeds and being off the oxygen are critical. Now, they'll want to see some weight gain and make sure she's able to fill her diapers. Pray for her ability to relieve herself without the need for a suppository.

Finally, yesterday's visit with Jacob & Jensen was priceless. We got to play in the roof-top park, eat a snack in the cafeteria, watch the Bulls almost beat the Pacers in a furious finish, and color Easter pictures for JG's room. It was fun to talk with them in person and it seemed they had each grown 6 inches in the past week.

Picture #1 is still with oxygen but no feeding tube yet.
Picture #2 is with feed tube but no need for other attachments.
Pictures #3-#5 require little explanation.