Rough days

I never imagined that it would be such struggle to feed our child. Isn't that what being a baby is all about - eating, growing and thriving? Another unexpected piece of our new reality...

The last few days have been pretty rough. Owen needs to take in 20 ounces of fortified formula or 24 ounces of regular formula a day to gain weight. Our days are completely "consumed" by these numbers. We keep a food journal. At any given time, we know how much food he's had, how many meals he's lost that day and how many more ounces we have to reach our goal, which always seems to be just out of reach.

We feed him every 2-3 hours, holding him still and upright for up to an hour after each feeding to try to keep things down. Feedings have become so stressful for all of us. Owen cries, oftentimes trying to avoid the bottle. He's learned that this, which should be a positive association, is actually what produces such discomfort for him. It is so distressing to watch. Then there is the sound. The choking, throaty sound which means that the food is about to come up. To a parent who is so desperately trying to get their baby to eat and keep food down, this sound elicits anxiety, frustration and disappointment.

This last week, the vomiting increased significantly. We averaged 12-16 ounces a day with 4-5 meals coming up (this equates to somewhere around 12-15 vomiting episodes). We weighed him on Wednesday - he had lost half an ounce in six days. We became desperate so took the advice of a few folks, including the naturopath, and tried goat milk fortified with flax oil, B vitamins, folic acid, vitamin E... We were told that it is the closest thing to human milk. He spent the next day vomiting almost everything. We spent Thursday evening rehydrating him with water and got him back on the original formula.

We've tried breast milk (when that was still available), hypoallergenic formula, easy to digest whey formulas, various regular formulas, goat milk... We may or may not try a soy based formula. Admittedly, we're pretty convinced that WHAT he's eating is not the problem.

Part of our challenge is coping with the acid reflux (GERD). This is a MAJOR hurdle for babies even by itself. The other challenge is that because of the insult to his nervous system, Owen's body behaves differently. He is hypertonic in the extremities (arms and legs are spastic and the muscles stiff) and hypotonic in his trunk (muscles are more relaxed and less able to move things through). The latter complicates the GI system - everything from keeping food down to moving it through and eliminating it, becomes more difficult.

We've known for some time now that Owen will face a unique set of challenges. We are as prepared as we can be at this point to come up with creative ways to deal with these. But our biggest hurdle right now, and the most critical one, is to get Owen nourishment. He needs calories not only to grow, but to try to heal from his experience. And so we will continue to find ways to "feed" him - in every sense of the word.