We Have a Plan

Kudos go to Tammy, our nurse practitioner today.  We understand that everyone tries to keep us involved with planning, but Tammy really sat down and took a good chunk of time to hash out a plan for Karsie and for that we are incredibly appreciative.  The key now is that this plan is either kept or we are involved in changes as they need to be made.

Problems:  Karsie is now not handling her full feedings as she has been off of it for so long.  Dr. Saenz continues to be doubtful that it is an obstruction, so now our goal is to work on feeding and growing.  However, Karsie is not doing as well as she was doing at home.  She is tired and defeated.  Also, she is not gaining weight and is, in fact, losing quite a bit of weight.  This problem is a downward spiral.  She needs to eat to gain weight, but she can't eat because she can't tolerate her feeds, which makes her tired and then causes her to lose weight.  

Solutions:  Our plan is to start her taking 50 mL of breast milk every 3 hours.  She did not eat enough when she was able to take it on her own, so we are going to have to use her feeding tube, which hopefully will increase her weight/stamina and cause her to eat more orally which will get her to eventually take the tube out.  We have a little leeway to play with during her 3 hours.  If she is hungry the nurses (or we) will feed her orally until she is done as long as she gets at least 50 within the 3 hour time limit.  We also are slowing down the rate that she is fed by tube since she tends to throw up on the tube.  The plan is to give her a chance to feed orally every feed.  What she doesn't take will be given to her by the tube.  If she takes over half they will give her a small break and tube feed the rest over the hour's time.  If she takes less than half they will immediately put her on tube feeding over the hour.  This way she is not overworked during that time and her body has time to digest without getting pummeled with food.  This hopefully will get her to a point where she tolerates bigger volumes.  Finally, the plan is to increase her volume by 5 mL every 24 hours.  With no hiccups this will take approximately 4 days to get to full feedings again.  We then will start to think about adding in the extra fortifiers as she needs extra calories to continue growing that skin of hers on her belly.  We could be in for a while longer, but this definitely beats surgery.  

The final part of the plan that we really like is that it is written in the orders to contact us before any huge changes are made.  We're not sure how this will be delivered and followed through on, but we feel our opinion is at least being taken seriously for the time being.  That's all we ask.  Thank you Tammy...