Monday, April 27, 2009

Update # 1

I figured that I would break this update into two different posts so there wasn't a novel to read all at once!
Things are going pretty well with the boys. Elliot had his check up and shots last week and did very well. He is up to 12lbs 6oz already! He can wear Noah's diapers now! He is doing great at night and will go for a 7 hour stretch before he wants to eat again. It feels great to be getting more sleep and I surely didn't anticipate it happening so soon! He is super smiley and making all sorts of happy baby sounds.
Zane is good as usual and keeping very busy. He only has a month left of school, which does not seem possible. He will have the next two months free to enjoy his summer before football starts. Right now he is getting ready for the school triathlon in two weeks. He has to ride his bike for 2miles, run for 1/4 of a mile and swim for 1/4 of a mile. He is really excited about it! He is still active in cub scouts and lots of activities for school. There is always someone at the door after school and on weekends wanting him to come out and play and the phone is always ringing! There are no boys in the neighborhood so its just girls to play with. Zane doesn't seem to mind at all...:)
We are loving the weather!! We are outside as much as we can be. Noah loves being out in the dirt playing in his water table. He and Zane found a bag of water balloons left over from last summer that have kept them both very entertained!

Friday, April 10, 2009

Feeding Frustrations

So our big plan to start weaning Noah from his tube feeds has backfired...
For the last three weeks or so, Noah's oral intake was starting to suffer and is now back down to almost nothing. It has diminished into only taking a bite or two at a meal and often refusing anything. We have no idea what is causing this and can't understand why backing down on tube feeds has not stimulated any sort of increase in appetite. He had a check-up with his pulmonologist this week along with a chest x-ray. I was terrified that the x-ray was going to show reherniation or something that would account for the change in appetite, but thankfully the x-ray actually looked pretty good! The Dr was not happy about his weight and I tried to explain that we were trying to wean the feeds because he was eating so well just a few weeks ago. We have found that every Dr, according to their specialty, has a different opinion when it comes to feeding. His pulmonologist was not in agreement with the wean and actually wanted us to increase his calorie intake by about 400cal per day. We talked to the dietitian up in Ann Arbor that we have been working with and told her of the Dr's concerns, Noah's current weight and length as well as his aversion to food these past few weeks. Needless to say, we are back at square one. Not only are we increasing his nightly feeds, but we are back to trying to bolus him through the G portion 3 times a day along with the water bolus as well. We are going to do this for a few more weeks and try and get some more weight on him, and go from there. I know that this increase in calories is not going to do anything for his appetite, but I also know that it is important for him to have the proper nutrition and fluids. I just wish I could figure out what causes the inconsistency with his appetite. Despite his feeding issues, he is doing great. He is walking everywhere and launching into the terrible two's. His speech and communication skills seem to improve everyday. I am in awe of this little person he is becoming with his own personality and character.
Zane is doing great and had an AWESOME time in Seattle! He really wants to move there now! Thanks to Kelly and Jeff and the boys for showing him the sights in their new home and giving him such a memorable Spring Break! He hasn't stopped talking about it since he got home! I am so glad he got to have that experience. He is now more traveled than I am!
Elliot is doing well and thriving! He is getting to be such a roly poly! He will have his two month check-up and shots this week:( Poor guy! He has developed a dashing smile that melts the heart and will push up on his arms and roll from his tummy to his back. Noah is sure to shower him with kisses and hugs all day long!
A quick "proud Momma" moment...the other day I took all three of them to the post office. I was happy that no one was there when we first walked in, fearing that the boys would be unruly. (I swear they can smell my fear!) Within minutes there were like 15 people in line. I was trying to juggle my items to ship and Elliot's car seat, all the while praying that Noah would behave. I glanced back at Zane and he had Noah sitting quietly by the counter, his arm around Noah to keep him from bolting and each with a sucker in their mouth. Zane said, "I got it Mom, don't worry". I don't think my heart could have gotten any bigger at that moment!
Have a happy and blessed Easter!