The "H" Word

The doctor actually said it...the "H" word - home! Now, don't get too excited yet - it's very cautious and not at all certain.

Tuesday morning I had a discussion with Dr. Isatt, their current doctor. She actually took care of them at Duke when they were very, very sick. She was disappointed to see they were still here. Monday when I spoke with her, I had expressed our own frustration and once again mentioned bringing them home on gavage. She wanted to consult with Dr. Malcom at Duke, a reflux specialist to see if he had any idea. Tuesday, she told me his ideas and the new plan.

The Problem:
Dr. Malcolm suggested two things that may be related: First, Since they tend to take the first 25-35ml okay, he thought maybe their stomachs are not emptying as quickly as they should and they feel full and therefore stop eating. He thinks this could be related to: Second: a possible milk-protein allergy. It's also possible the first thing isn't true, but the allergy is.

The Plan:
Starting today at their 2pm feeding they started receiving Elecare - a non-milk product formula. They will try this for one week to see if it helps. At the same time - mom is now on a dairy-free diet. No cheese, butter, milk, and I realized today - no chocolate! I will continue to pump and mark the dairy-free milk (isn't that an oxymoron!) so if the Elecare seems to make a difference, they can take dairy-free breast milk. Why, you may wonder, would I continue to breast feed if I have to give up all dairy. Well, the answer is that one can of Elecare is $35-$45. At their current consumption (which will only continue to go up), one can will last about 3 days. So, that's about $450 a month in formula. Now you understand.

The Conclusion:
Two scenarios are possible from this new plan:
One: The dairy-free regimen works, they start eating well, and could come home at the end of next week.

Two: The non-dairy regimen doesn't work, and they still may go home at the end of next week, but with a ng-tube (nose feeding tube) and a time table of one month. We will work on the feeds and check in with Dr. Malcolm for one month. If they haven't gotten it by then, we potentially move to 2a: a semi-permanent g-tube (a feeding tube inserted surgically directly into the stomach). The nose tubes have to be changed once a month (or whenever the girls pull them out which is rather frequently). There's a greater chance for infection and irritation. Obviously, we don't want to get to option 2a.

I firmly believe they will do better at home - if I can just get them there. By whatever method, there is a good chance they will come home at the end of next week - provided everything else stays okay.

Nothing is for sure, but at least we have some of the other "H" word - hope.