I thought I should give a quick update on life right now.
We believe Noah is feeling better on Neocate formula and from being fed a small amount each hour around the clock (continuous feeds). He went from retching 30-40 times a day to between 10-12. A HUGE ANSWER TO PRAYER!!!! We are now working on building a bolus feed where Noah would take a feed in one hour, and have one hour off. The exception is night time where he will continue (for a LOONNNGG time to come) to take a continuous feed each hour through the night.
We have been working towards a bolus for 2 weeks now and have managed to raise his rate by 30 ml an hour. That means in another 20 mls, Noah will be taking a one hour feed. This is by no means less work for us, however, so once the one hour on, one hour off is established, we will push on to try for 3 hour feeds. Hopefully within another 2 weeks we will be at hour on, hour off.
We will see the GI Dr. in October and that may just be the final step in Noah's medical investigations. Why he couldn't and then wouldn't eat might may always be a mystery, aside from his severe reflux. Noah's genetic, metabolic and neurological tests are clear. Somedays, the hardest part of caring for his medical needs is not really knowing what the underlining issue might be. So we accept what is, what a fine fellow our Noah is, and enjoy our days to the best of our ability.
Noah has had quite the menu offerings lately with french fries topping the list! He is a very social guy, enjoying sitting in his high chair, playing with his food, feeding mom and dad and showing off at feed clinic with his OT. The only part he isn't so excited about is.....well, actually eating and drinking or putting food in his mouth. We aren't surprised by this and continue to keep our long term (read: years) plans in mind with each meal. First, keep food times positive and fun. Second, Noah makes the choices about when/what/how he will eat. Third, keep offering him food, throwing it away without guilt and trying again at the next meal.
Noah has a mixed bag of night sleeps. He is whimpering much less (ANOTHER HUGE ANSWER TO PRAYER) so when he is up it is usually for a short period of time. I was up 4 times last night with retching or crying. We definitely feel like we are out of survival mode with sleep and are able to get a few good hours in a row which is very refreshing. We've had a few incidents of the tube opening during the night which makes for a smelly bed and baby, but we are learning how to avoid this with loads of tape. It stills make us nervous to have a chord hanging over the crib rail attached to our son, but we trust that the stiffener sticks we are provided with from Home Nutrition will keep him safe each night.
Tube feeding has become our normal. We modify the regular baby "stuff" so that it works for Noah. We manage the extra stress and costs involved in Noah's care. We are more than just existing and instead trying to find ways to care for others in similar circumstances. I (Dar) am completely medication free. Many prayers have been answered. Thanks be to God.
Our sincere thanks for taking the time to read our blog, write notes of encouragements, have playdates, ask questions about Noah's feeding, email a comment....it really makes such a difference in managing the day-to-day. Blessings.
Here are a few pictures from our weekend travels:
Practicing drinking from a cap with mommy!
Trying out some boating
Bluey (our suitcase) goes just about anywhere
Just before Noah fell asleep on the boat ride