The last month has been a struggle fighting the NG tube, skimming milk, giving meds, entertaining a 2.91 year old and lets not forget pumping and potty training and the millions of dishes that go along with milk skimming! Don't get me wrong, we are so thankful to be home all together and we love Tyler so much. The day to day care is a lot. Sprinkle that in with the many doctor's appointments and therapy sessions and you have an exhausted family.
Teaching Tyler to eat has been one of the most frustrating endevours. Since he was born, six months ago, Tyler has had an NG tube in his nose for feedings. In the beginning it was necessary because he was too sick to take in full feedings. As the complications continued, he grew dependant on his tube for feedings. Sometime during the lengthy hospital stay, he developed a severe oral aversion. We were sent home from the hospital with an NG tube and an expectaion that he would start eating everything by mouth in a few months.
Feeding sessions have been all across the board for Tyler. He went from screaming when a bottle came near to taking 1/3 of many feeds successfully before rejecting the bottle and needing to be tube fed the remaining milk. We were not able to get into therapy until October. (Yes, there is therapy for eating) Every three hours we offer the bottle and give him twenty minutes to try feeding. We were really hopeful that he would pick it up and just take off, but that has not been the case. One night he took a full feed from his bottle...but the next day he only took 10% of all feedings from a bottle. Add this to his ability to get an NG tube out every time you turn around and we start thinking seriously about our doctor's recommendation to get a gastrostomy tube. The doctors are hoping that not having something in his nose and throat may help him get over his aversion and eat better.
We decided to set the date for his G-tube for Nov. 16th. We are going into this hoping that Tyler will be able to overcome his aversion to the bottle. Julie met with a dietitian and doctor last week and we have the go ahead to start letting Tyler play with some solids to get him used to the feel and smell of real food just as soon as he is healed. The fruits and veggies, along with not having an NG tube will hopefully get Tyler liking food in his mouth. We are really praying that the G-tube will not be a part of Tyler for too long, but we do not know how long he has to have it.
Connor went to stay at Grandma and Grandpa Pfleeger this last week and will be meeting us in Indianapolis this weekend looking forward to a museum trip! Julie had a good week of getting the house cleaned up and working with Tyler on feedings. We were able to go out on a date this last week without any kids thanks to an amazing respite care program at St. Mary's College. We have two final semester nursing students who come out to our home to help with the kids. They are volunteering for 16 hours this semester! What a great program.
Connor is potty training ("potty trained almost" he says). When your two year old starts changing his own diaper I think that he is ready to start training (true story). So far it has been a few weeks and very successful. The motivation: A doggy guitar. He earned the doggy guitar after a few days of no accidents.
