Day 5, 12:15 PM

Our rollercoaster rides the rails of certainty (or uncertainty) and our spirits are the caboose following in lock-step. Last night was a low point as we dealt with a child who was clearly ill from her inability to rid her body of her stool (probably the result of all the drugs she's been given this week). We've never seen her in pain for such a long period of time. At this point, her ability to sustain herself with nutrition is our ticket home and anything that thwarts our progress is dibilitating as it casts a cloud over our coming days. JG was beside herself last night and that is difficult to observe whether in a hospital or the comfort of home.

After 12:30 AM, Janie rested pretty well last night until 6:30 with Jennifer joining her in the room. This morning she continued to be mildly fussy and started to cry everytime I got near her with a bottle! (We have to laugh about it!) After a bath and a brief nap, she woke up looking and acting like herself (bright eyes, beautiful complexion) and was willing to give the bottle a try again as she feels much better. She got 1 oz, so it's a work-in-process. The attending cardiologist wants to give feeding a try for one more day (today) and see how she does. A feeding tube would be inserted through a nostril tomorrow if we don't see measurable progress. At this point, they're talking about a tube to her stomach. This is attrative from the standpoint that we can be taught to feed the tube into her belly ourselves should it come out or we could have a nurse friend (Krista K.) on speed-dial without worry of having it set in the intestine (as was the case pre-surgery) with need for radiology confirmation. The doctors have assured us that the tube shouldn't be viewed as failure by Janie or her parents. Kids that were eating well pre-surgery sometimes need a tube in the weeks after surgery. They reminded us that her interest in food and tolerance of it is progress and her body may need time to grow accustom to the volume she requires. It's hard for us not to question at times...could we have done something differently or better that would have allowed eating to be less difficult? It's nice to not be made to feel guilty as we certainly inflict some self-guilt at times.

The tube is both friend and foe. The friend provides certainty that she's getting what she needs and allows her medicinces to be easily administerd (right now most of them are going in by mouth which takes some work). The foe is delibitating as it makes us nearly immobile with JG. However, as an alternative to uncertainty, we reluctantly accept it and give thanks for a tool that helps as it's unpleasant to think of the alternative. We're hoping to graduate from continuous feeds to a regiment that woul allow us to try the bottle and quickly express what she doesn't get via the tube to more closely resemble the dining habits of the rest of us. This would improve flexibility as she could be away from the pump more often.

I hope you can tell that 0ur spirts are a bit better today as she shows a willingness to try eating again even if it's a fraction of what she needs to grow. Plus, JG is acting like herself which is sort of crazy because she shouldn't be acting happy while getting so little nutrition (you and I wouldn't be!).

One thing that's been encouraging us throughout the week are daily updates we read and watch about a revival taking place in Flint, Michigan this week. I would encourage you to check out http://www.reviveflint.com/. The Lord is at work there and you'll be encouraged to learn about what is happening on this Easter weekend. The daily video summaries are powerful. It's a reminder that life is bigger than the 4 walls that surround us at Brenner.

To further raise our spirts, we look forward to an afternoon visit with the kids. There's an outdoor playground on the roof. Janie is now mobile enough to potentially join us outside or atleast take some laps around the hall. She has a trace amount of oxygen running to her nose still but has been permitted to be unhooked from the monitor and other wires, so she's relatively mobile (further confirmation that her heart surgry recovery is going unbelievably well). The surgeon cleaned up the bandage that had taken a turn for the worse during last night's outbursts so her wound looks so much better.

Since you probably just skimmed the last 4 paragraphs rather than read my ramblings...here's what you wanted.