Monday, July 27, 2009

Golden $plash!

On Friday marked a little milestone that thrilled this hopeful mother. Bambino learned to sip from a straw without any aid. Consequently, this newly acquired skill made him a little more interested in his formula.He likes the novelty of the straw.

The past week, EO28 Splash is all he would drink. Like Neocate, it is nutritionally complete, hypo-allergenic and it's calorie dense at 30 cal per ounce. Unlike Neocate, it is ready to drink so it's convenient - no measuring and mixing. It is also mucho expensivo. We've been giving him samples from our Nutritionist and the doctors' offices and we are almost running out so I scrambled to go online to see where they can be purchased. My husband always goes to Amazon first and we were floored to find out that it costs $14.55 plus $11 S&H for an 8oz pack! With insurance refusing to cover it, there's no way we can afford $25 per 8 ounce.

Fortunately, it sells for a lot, lot less at the Nutricia online store at $115 for a box of 27, plus Hubby found a $25 discount coupon online bringing the cost down to about $3.33 per 8oz pack. Huge relief! And we are just as ecstatic that he is eating a lot more than his 3oz average daily intake of Neocate.

On the G-tube front, we are still awaiting the result on that one test the GI doc ordered, the result of which will aid us in our decision whether or not to place him on feeding tube.

Wednesday, July 15, 2009

The Weaning Plan

It has been an eventful couple of weeks. Bambino had a back to back break out, with only a day respite in between. His bowel movement is just now normalizing after a couple of weeks on MiraLax. He was given Align in conjunction with MiraLax but i'm finding it very tricky to have him take it since it doesn't dissolve in liquid.

Two weeks ago, we saw another GI doctor for a second opinion on the GI feeding. He put Bambino on Megace, a synthetic hormone (progesterone) which is usually given to patients suffering from Anorexia and AIDS. Under normal circumstances, I would never allow my baby to take those kinds of stuff, especially since its safety and efficacy has never been tested on children. But I guess we've passed "normal" now, and i'm willing to try anything before we have to drill a hole through his stomach.

But Bambino, fortunately, seems to have an aversion to anything that might harm his body. He reacted negatively to Megace. He hated the medicine; he gagged when we gave it to him. It also made him restless. He woke up in fits during the night. And it really didn't improve his appetite anyway.

We called the doctor after a couple of days to let him know that we were taking the baby off it. Incidentally, our Dietitian and Feeding Therapists both think that Megace doesn't really do anything good to most babies. Our primary GI doctor told us yesterday that he doesn't believe in it. There's just too many side effects, he said.

Yesterday, we went back to Dr. E, our GI doctor. We found out Bambino lost another precious ounce. So, we talked about the details on placing him on the G-tube. He explained the procedure to us. He answered all our questions. He knew that we are reluctant to put Bambino through that kind of surgery. Towards the end of our consultation, I asked him again if this is the only option left for us. He reiterated that the primary goal is to put Bambino exclusively on Neocate or Elecare to find out if he has been reacting to breastmilk and whatever solids we are feeding him, and to have him take more formula rather than breastmilk. And so, we could try to wean him off the breast, which we did before but without result.

We agreed to do give it one last shot and we will have to wean him cold turkey. It means I will have to "disappear" for a couple of days. It probably means letting him starve for a while but we're hoping he will take the bottle when the milk truck (that's me) is out of sight. It will ruin our weekend plans but we gotta do what we gotta do. If this doesn't work, we will have to schedule surgery by next week.

I'm praying it will work because the last option is not entirely attractive.

P.S. I'm feeling melancholic about the thought that these could be the last few days I'm going to nurse my Bambino. That's one less thing he will need me for :(