CHOP Update

Hi all. We are here at CHOP and will be here till Friday or Saturday. Alexandria's surgery went well. We got to CHOP at 6:00 a.m. on Tuesday. Alex was our surgeons first surgery of the day - that's what you want...first surgery of the day, early in the week. :) The surgery itself took an hour or so. Prep and anesthesia tacked on an additional hour. We got a private room with a very nice view and our nurses are all excellent. The day and night of surgery Alex was not allowed to eat or drink anything. Today she was allowed to eat and drink by mouth. She also started her day time feeds which she tolerated well. Her continuous night time feed will start in about 20 minutes. The rate of her day time feeds is slower and the volume is less then what Alex will go home on. First we are working up to the required volume to make sure she can tolerate it and then we will decrease the rate from an hour to half an hour to see if she can tolerate that. Basically, we are splitting up 50% of Alexandria's calorie intake over 3 day time feeds. The other 50% will be fed overnight like they are now and since she has been tolerating those fine via the NG tube there is no adjustment needed. We are offering Alex food and drink by mouth before each feed. She did eat and drink by mouth today which is good. For her, she ate and drunk a good amount. Alex is not and has not been drinking or eating enough on her own though to make much of a difference in her calorie intake so her eating by mouth will not affect her tube feeds. We are working with the Feeding Team to "make friends with food" - this will take a lot of work and time. We have been told that Alexandria's story is very common among premature babies. Now that the anesthesia completely wore off Alex is acting like a crazy person - very hyper and wanting to resume normal activity. Her nurse said that she is "all over the place". This is good and what we want to see but...all the moving around is irritating her stoma which is giving her pain so today we decided to give her Tylenol mixed to an Oxycontin every 4 hours for pain. Alex has not gone near the Mic-Key button but likes to pull on all her wires and tubes so we need to make sure that they are hidden at all times and out of site. Steve and I took a class on the Mic-Key button this morning and later on met with our case manager (who will coordinate Home Care orders, etc.). Alex is suspicious of all the nurses and very clingy with me which is what we expected. We are exhausted and looking forward to the healing part and the figuring out feeds part to be behind us. Thank you for your continual prayers! We will keep you update.